From familyvoices at inpress.pledgonline.com Fri May 1 01:52:56 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 1 May 2009 18:22:56 +0930 Subject: FV: Jane 48 hour plan In-Reply-To: References: <1527177766-1240446779-cardhu_decombobulator_blackberry.rim.net-1252393182-@bxe1008.bisx.prodap.on.blackberry> Message-ID: Hello Jane I am sorry it has taken so long to get this plan to you, not that my promise went out of my mind just so many other things have needed attention as well I must say it has been good to read all the exchange going on between people and realize just how much we do all need a network To the 48 Hour plan. Firstly I must tell you it was the brain child of a lady named Fiona Munro and I would be grateful if you could acknowledge her if you pass it on to others. It was devised for older parents who for obvious reasons were well aware of the need to pass on vital information about their dependant son or daughter to others if the need should suddenly arise. There are three parts to this plan The first is a picture book made up of Photos of Rachel doing things she enjoys , her family her work her daily activates and her animals, Some places she like to go and Holidays she has been on. We collected these together and in conversation about them she wrote a few words about each one. The purpose of part one is so that a stranger who may need to take over in an emergency might be introduced to Rachel and so discover things in her life she could relate too and share with them Part two is the 48 hour plan, as you will see this gathers together much of the vital information which is essential for the immediate and ongoing support of Racel?s daily program. The questions I think are self explanatory, but most of which Rachel might not be able to remember or know where to find. Part Three (not Attached) is a summary of what is mostly in my brain alone, all the background of her general health needs , the names of Doctors the times seen and current progress. We were so aware that much of this information is passed from doctors to parents, which is then not really shared. Also we are aware that much information is still kept in the filing cabinets of the various medicos?. We have made it a practice of requesting all reports of assessments and examinations. This document will tell where these are kept and which specialists are currently involved It looks a mammoth task but when I set my mind to it ,it was amazing how much was actually just sitting in my brain and I did not need to much research at all now each time we have a new appointment I just add the date and the reported outcome. This is at the moment being introduced to older parents during a series of information sessions being run by Carer Support Planning in Partnership Program in several vicinities in Adelaide It is of course not for everyone but it did force us to consider what the next journey might be for Rachel. My warmest wishes with some good memories of the time we all shared Miriam _________________________________________________________________ Looking to change your car this year? Find car news, reviews and more http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fsecure%2Dau%2Eimrworldwide%2Ecom%2Fcgi%2Dbin%2Fa%2Fci%5F450304%2Fet%5F2%2Fcg%5F801459%2Fpi%5F1004813%2Fai%5F859641&_t=762955845&_r=tig_OCT07&_m=EXT -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: 48 HOUR EMERGENCY PLAN.doc Type: application/msword Size: 68096 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Fri May 1 02:32:38 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 1 May 2009 19:32:38 +1000 Subject: FV: Jane 48 hour plan In-Reply-To: References: <1527177766-1240446779-cardhu_decombobulator_blackberry.rim.net-1252393182-@bxe1008.bisx.prodap.on.blackberry> Message-ID: <8EC05144E4224350B55824F63FFD8F10@dell91> HI Miriam How lovely it is to connect again house mate. Thank you for the 48 hour plan I will try my best at sharing it around. It is a lot of work handed down thank you. Yes the networking for me has been amazing I just love it. Best thing that has happened. Guess what I am now Facebooking!! And Skipping WOW I am blown away. Had a few people say do it and I suppose with the support from the girls on family voices I am stepping out. WELL can I tell you, last night I found a headset of Sarah's always wondered why it had two things to plug into computer any how worked out one was for a microphone. I signed up for skype it searched for people, I called my niece in the Caribbean and then today I spoke to Wendy in Canada!!!! All is well there, she is going to send some photos of her mum's place which now has no snow and the lake has geese all over it. I have sent her the link to family voices. She is the loveliest person and family I feel absolutely blessed to have the experience and feel confident that we will carry the connections for a life time. Hope you and family are well. Kindest regards Jane Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, May 01, 2009 6:53 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Jane 48 hour plan Hello Jane I am sorry it has taken so long to get this plan to you, not that my promise went out of my mind just so many other things have needed attention as well I must say it has been good to read all the exchange going on between people and realize just how much we do all need a network To the 48 Hour plan. Firstly I must tell you it was the brain child of a lady named Fiona Munro and I would be grateful if you could acknowledge her if you pass it on to others. It was devised for older parents who for obvious reasons were well aware of the need to pass on vital information about their dependant son or daughter to others if the need should suddenly arise. There are three parts to this plan The first is a picture book made up of Photos of Rachel doing things she enjoys , her family her work her daily activates and her animals, Some places she like to go and Holidays she has been on. We collected these together and in conversation about them she wrote a few words about each one. The purpose of part one is so that a stranger who may need to take over in an emergency might be introduced to Rachel and so discover things in her life she could relate too and share with them Part two is the 48 hour plan, as you will see this gathers together much of the vital information which is essential for the immediate and ongoing support of Racel's daily program. The questions I think are self explanatory, but most of which Rachel might not be able to remember or know where to find. Part Three (not Attached) is a summary of what is mostly in my brain alone, all the background of her general health needs , the names of Doctors the times seen and current progress. We were so aware that much of this information is passed from doctors to parents, which is then not really shared. Also we are aware that much information is still kept in the filing cabinets of the various medicos'. We have made it a practice of requesting all reports of assessments and examinations. This document will tell where these are kept and which specialists are currently involved It looks a mammoth task but when I set my mind to it ,it was amazing how much was actually just sitting in my brain and I did not need to much research at all now each time we have a new appointment I just add the date and the reported outcome. This is at the moment being introduced to older parents during a series of information sessions being run by Carer Support Planning in Partnership Program in several vicinities in Adelaide It is of course not for everyone but it did force us to consider what the next journey might be for Rachel. My warmest wishes with some good memories of the time we all shared Miriam _____ _____ Find car news, reviews and more Looking to change your car this year? No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.11/2089 - Release Date: 04/30/09 17:53:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 1 17:12:46 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 2 May 2009 08:12:46 +0800 Subject: FV: Jane 48 hour plan In-Reply-To: References: <1527177766-1240446779-cardhu_decombobulator_blackberry.rim.net-1252393182-@bxe1008.bisx.prodap.on.blackberry> Message-ID: <001d01c9caba$b9b2a430$2d17ec90$@net.au> Thank you so much for this Miriam, I was disappointed the time didn't allow for me to have a really close look and I wanted to share it with Dad (think I mentioned this) and now I can. I think WA is just about as dry as Adelaide at the moment, last night the weather report said that this is the least amount of rain by beginning of May for some years (can't remember the year) and every day for the next 7 are temps of around 29 degrees with no rain in sight. Have a beaut day Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 1 May 2009 4:53 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Jane 48 hour plan Hello Jane I am sorry it has taken so long to get this plan to you, not that my promise went out of my mind just so many other things have needed attention as well I must say it has been good to read all the exchange going on between people and realize just how much we do all need a network To the 48 Hour plan. Firstly I must tell you it was the brain child of a lady named Fiona Munro and I would be grateful if you could acknowledge her if you pass it on to others. It was devised for older parents who for obvious reasons were well aware of the need to pass on vital information about their dependant son or daughter to others if the need should suddenly arise. There are three parts to this plan The first is a picture book made up of Photos of Rachel doing things she enjoys , her family her work her daily activates and her animals, Some places she like to go and Holidays she has been on. We collected these together and in conversation about them she wrote a few words about each one. The purpose of part one is so that a stranger who may need to take over in an emergency might be introduced to Rachel and so discover things in her life she could relate too and share with them Part two is the 48 hour plan, as you will see this gathers together much of the vital information which is essential for the immediate and ongoing support of Racel's daily program. The questions I think are self explanatory, but most of which Rachel might not be able to remember or know where to find. Part Three (not Attached) is a summary of what is mostly in my brain alone, all the background of her general health needs , the names of Doctors the times seen and current progress. We were so aware that much of this information is passed from doctors to parents, which is then not really shared. Also we are aware that much information is still kept in the filing cabinets of the various medicos'. We have made it a practice of requesting all reports of assessments and examinations. This document will tell where these are kept and which specialists are currently involved It looks a mammoth task but when I set my mind to it ,it was amazing how much was actually just sitting in my brain and I did not need to much research at all now each time we have a new appointment I just add the date and the reported outcome. This is at the moment being introduced to older parents during a series of information sessions being run by Carer Support Planning in Partnership Program in several vicinities in Adelaide It is of course not for everyone but it did force us to consider what the next journey might be for Rachel. My warmest wishes with some good memories of the time we all shared Miriam _____ _____ Find car news, reviews and more Looking to change your car this year? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 1 17:22:43 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 2 May 2009 08:22:43 +0800 Subject: FV: Jane 48 hour plan In-Reply-To: <8EC05144E4224350B55824F63FFD8F10@dell91> References: <1527177766-1240446779-cardhu_decombobulator_blackberry.rim.net-1252393182-@bxe1008.bisx.prodap.on.blackberry> <8EC05144E4224350B55824F63FFD8F10@dell91> Message-ID: <002201c9cabc$1c4bec90$54e3c5b0$@net.au> Hi Jane OK, I need to catch up, Facebooking I've heard of but Skipping is a new one on me. Is Facebooking a way to communicate with others or just to put your photo's and stuff on for others to see? Thanks for sharing your challenges with technology Jane, I am feeling more confident about admitting how much I don't know. You had me cracking up about the two "things" to plug into the computer - I can soooo relate. The description of Wendy's mums place sounds amazing and what a change in one month. I agree, she, the families we stayed with and others have made a lasting impression and feel the connections with our Canadian friends will go on. We are having another incredibly gorgeous day in Perth but everyone's looking for rain. Hope yours is a joyous one. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 1 May 2009 5:33 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Jane 48 hour plan HI Miriam How lovely it is to connect again house mate. Thank you for the 48 hour plan I will try my best at sharing it around. It is a lot of work handed down thank you. Yes the networking for me has been amazing I just love it. Best thing that has happened. Guess what I am now Facebooking!! And Skipping WOW I am blown away. Had a few people say do it and I suppose with the support from the girls on family voices I am stepping out. WELL can I tell you, last night I found a headset of Sarah's always wondered why it had two things to plug into computer any how worked out one was for a microphone. I signed up for skype it searched for people, I called my niece in the Caribbean and then today I spoke to Wendy in Canada!!!! All is well there, she is going to send some photos of her mum's place which now has no snow and the lake has geese all over it. I have sent her the link to family voices. She is the loveliest person and family I feel absolutely blessed to have the experience and feel confident that we will carry the connections for a life time. Hope you and family are well. Kindest regards Jane Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, May 01, 2009 6:53 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Jane 48 hour plan Hello Jane I am sorry it has taken so long to get this plan to you, not that my promise went out of my mind just so many other things have needed attention as well I must say it has been good to read all the exchange going on between people and realize just how much we do all need a network To the 48 Hour plan. Firstly I must tell you it was the brain child of a lady named Fiona Munro and I would be grateful if you could acknowledge her if you pass it on to others. It was devised for older parents who for obvious reasons were well aware of the need to pass on vital information about their dependant son or daughter to others if the need should suddenly arise. There are three parts to this plan The first is a picture book made up of Photos of Rachel doing things she enjoys , her family her work her daily activates and her animals, Some places she like to go and Holidays she has been on. We collected these together and in conversation about them she wrote a few words about each one. The purpose of part one is so that a stranger who may need to take over in an emergency might be introduced to Rachel and so discover things in her life she could relate too and share with them Part two is the 48 hour plan, as you will see this gathers together much of the vital information which is essential for the immediate and ongoing support of Racel's daily program. The questions I think are self explanatory, but most of which Rachel might not be able to remember or know where to find. Part Three (not Attached) is a summary of what is mostly in my brain alone, all the background of her general health needs , the names of Doctors the times seen and current progress. We were so aware that much of this information is passed from doctors to parents, which is then not really shared. Also we are aware that much information is still kept in the filing cabinets of the various medicos'. We have made it a practice of requesting all reports of assessments and examinations. This document will tell where these are kept and which specialists are currently involved It looks a mammoth task but when I set my mind to it ,it was amazing how much was actually just sitting in my brain and I did not need to much research at all now each time we have a new appointment I just add the date and the reported outcome. This is at the moment being introduced to older parents during a series of information sessions being run by Carer Support Planning in Partnership Program in several vicinities in Adelaide It is of course not for everyone but it did force us to consider what the next journey might be for Rachel. My warmest wishes with some good memories of the time we all shared Miriam _____ _____ Find car news, reviews and more Looking to change your car this year? No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.11/2089 - Release Date: 04/30/09 17:53:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 1 18:29:54 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 2 May 2009 09:29:54 +0800 Subject: FV: Communication Devices etc In-Reply-To: References: <000c01c9c98b$d5562700$80027500$@net.au> <001901c9c9e0$3854ab20$a8fe0160$@net.au> Message-ID: <002401c9cac5$7f4a8cd0$7ddfa670$@net.au> DO you have a resource centre in Qld? We have the Independent Living Centre in Perth and you can hire touchscreen devices out for a month just to try them out. There must be an option like this in Q? Yes, Eli's crew, 'Merger of Minds' are designing primarily Boardmaker SDPro boards for people using devices, but will have a go at anything you need and will also refer you to free or cheap online options. They are researching two potentially very cheap touchscreen options right now - I'll let you know as soon as they find something good (they are thinking under $500 is good). If all else fails, Eli's crew might be able to hire a toughbook to you for a (comparatively) reasonable price...let us know if you'd like to explore that. They are just finalising the toughbook hire program this week. We find that so many folks just never get to try these things out, so having the option for short term hire where the timing is dictated by the family not the meagre availability of the existing hire service plus individualised support is proving to be a popular idea. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 1 May 2009 11:55 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Thank you for you all your information.. So far Jaquie, Sarah has not used the touch screen this was something the school had bought up and honestly I just didn't know they were available. I am inclined as you say to wait for the one Darrell was talking about. Jaquie I can remember you talking about Elis business putting programs in for people is this something that is happening? I will have a look at the toughbook as well. I suppose I was thinking the ipod looks groovy, my head is seeing something like in the taxi using it to tell the driver "mum office" or 'home". We have been looking at communication devices for sometime but again which one and I was thinking the computer/touchbook,/notebook/tablet could be that and more. Poor kid she will be celebrating her 21st before I make a decision. Thanks again Gina how do I get to Mac's bolg Cheers Jane Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, May 01, 2009 8:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Gina is right about the weight of the toughbook - it isn't super heavy but is heavy enough that, for example, we think twice about just grabbing and taking it to macdonalds or something like that. I can whip the fujitsu out of my purse easily if we want a quick, light option. Tablet technology is really taking off finally so I think in the next couple of years prices will really come down and there will be more choices. Have you checked out RJ Cooper? He's in the states but just bought out two cheaper tablet communication devices? Check out the mini augi on this page http://www.rjcooper.com/auggie/index.html I haven't used any of his hardware but I can vouch for him being a dude with integrity. Jaquie xx From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 30 April 2009 9:31 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Communication Devices etc Jaquie is right, we got our Fujitsu for $1000 with warranties etc. It is ok for Mac because many of the applications he will use initially are switching and we will likely plug it straight into a bit 32" screen for him here at home. And it is a fab size. Just working on a really good mounting system for it at the moment. The touch screen for Mac will be for specific applications where we want him to start learning that type of feel. I looked at the ToughBooks and liked them also, but figured I didn't need the extra weight just yet. Also, don't forget Darrell mentioned Asus (I think) were bringing out one of their webbooks in a tablet version sometime this year. If she doesn't need touchscreen because she is good at mouse pointing etc that might be a good option too. I assume it can still take external mouse and keyboard in a tablet form. Cheers Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1522 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.11/2089 - Release Date: 04/30/09 17:53:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 1 18:34:24 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 2 May 2009 11:34:24 +1000 Subject: FV: Communication Devices etc In-Reply-To: <002401c9cac5$7f4a8cd0$7ddfa670$@net.au> References: <000c01c9c98b$d5562700$80027500$@net.au> <001901c9c9e0$3854ab20$a8fe0160$@net.au> <002401c9cac5$7f4a8cd0$7ddfa670$@net.au> Message-ID: <2CDA582B-F507-46E1-9E6D-37FED0B2A8E3@bigpond.com> Also Spectronics hire out their stuff too - can you access them? Gina On 02/05/2009, at 11:29 AM, Family Voices wrote: > DO you have a resource centre in Qld? We have the Independent > Living Centre in Perth and you can hire touchscreen devices out for > a month just to try them out. There must be an option like this in Q? > > Yes, Eli?s crew, ?Merger of Minds? are designing primarily > Boardmaker SDPro boards for people using devices, but will have a > go at anything you need and will also refer you to free or cheap > online options. They are researching two potentially very cheap > touchscreen options right now ? I?ll let you know as soon as they > find something good (they are thinking under $500 is good). > > If all else fails, Eli?s crew might be able to hire a toughbook to > you for a (comparatively) reasonable price...let us know if you?d > like to explore that. They are just finalising the toughbook hire > program this week. We find that so many folks just never get to try > these things out, so having the option for short term hire where > the timing is dictated by the family not the meagre availability of > the existing hire service plus individualised support is proving > to be a popular idea. > > Jaquie J > > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Friday, 1 May 2009 11:55 AM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: Communication Devices etc > > Thank you for you all your information.. > > So far Jaquie, Sarah has not used the touch screen this was > something the school had bought up and honestly I just didn?t know > they were available. I am inclined as you say to wait for the one > Darrell was talking about. > Jaquie I can remember you talking about Elis business putting > programs in for people is this something that is happening? > > I will have a look at the toughbook as well. I suppose I was > thinking the ipod looks groovy, my head is seeing something like in > the taxi using it to tell the driver ?mum office? or ?home?. We > have been looking at communication devices for sometime but again > which one and I was thinking the computer/touchbook,/notebook/ > tablet could be that and more. > > Poor kid she will be celebrating her 21st before I make a decision. > > Thanks again > Gina how do I get to Mac?s bolg > Cheers Jane > Jane Warner/Hudson > > 07 46714737 > > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Friday, May 01, 2009 8:09 AM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: Communication Devices etc > > Gina is right about the weight of the toughbook ? it isn?t super > heavy but is heavy enough that, for example, we think twice about > just grabbing and taking it to macdonalds or something like that. I > can whip the fujitsu out of my purse easily if we want a quick, > light option. > > Tablet technology is really taking off finally so I think in the > next couple of years prices will really come down and there will be > more choices. > > Have you checked out RJ Cooper? He?s in the states but just bought > out two cheaper tablet communication devices? Check out the mini > augi on this page http://www.rjcooper.com/auggie/index.html I > haven?t used any of his hardware but I can vouch for him being a > dude with integrity. > > Jaquie xx > > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Thursday, 30 April 2009 9:31 PM > To: familyvoices at inpress.pledgonline.com > Subject: FV: Communication Devices etc > > Jaquie is right, we got our Fujitsu for $1000 with warranties etc. > > It is ok for Mac because many of the applications he will use > initially are switching and we will likely plug it straight into a > bit 32? screen for him here at home. And it is a fab size. Just > working on a really good mounting system for it at the moment. > > The touch screen for Mac will be for specific applications where we > want him to start learning that type of feel. I looked at the > ToughBooks and liked them also, but figured I didn?t need the extra > weight just yet. > > Also, don?t forget Darrell mentioned Asus (I think) were bringing > out one of their webbooks in a tablet version sometime this year. > If she doesn?t need touchscreen because she is good at mouse > pointing etc that might be a good option too. I assume it can > still take external mouse and keyboard in a tablet form. > > Cheers > Gina > > > I am using the Free version of SPAMfighter. > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1522 of my spam emails to date. > The Professional version does not have this message. > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.0.238 / Virus Database: 270.12.11/2089 - Release Date: > 04/30/09 17:53:00 > -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 1 20:01:08 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 2 May 2009 13:01:08 +1000 Subject: FV: Communication Devices etc In-Reply-To: <2CDA582B-F507-46E1-9E6D-37FED0B2A8E3@bigpond.com> References: <000c01c9c98b$d5562700$80027500$@net.au> <001901c9c9e0$3854ab20$a8fe0160$@net.au> <002401c9cac5$7f4a8cd0$7ddfa670$@net.au> <2CDA582B-F507-46E1-9E6D-37FED0B2A8E3@bigpond.com> Message-ID: <000601c9cad2$3e27d2f0$ba7778d0$@com> There's LifeTech here in Qld, and as Gina said, Spectronics. There's some families in qld that are really up with the latest technology stuff who can hopefully help here - I'll ask some of them to respond to this on this forum, too Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 2 May 2009 11:34 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Also Spectronics hire out their stuff too - can you access them? Gina On 02/05/2009, at 11:29 AM, Family Voices wrote: DO you have a resource centre in Qld? We have the Independent Living Centre in Perth and you can hire touchscreen devices out for a month just to try them out. There must be an option like this in Q? Yes, Eli's crew, 'Merger of Minds' are designing primarily Boardmaker SDPro boards for people using devices, but will have a go at anything you need and will also refer you to free or cheap online options. They are researching two potentially very cheap touchscreen options right now - I'll let you know as soon as they find something good (they are thinking under $500 is good). If all else fails, Eli's crew might be able to hire a toughbook to you for a (comparatively) reasonable price...let us know if you'd like to explore that. They are just finalising the toughbook hire program this week. We find that so many folks just never get to try these things out, so having the option for short term hire where the timing is dictated by the family not the meagre availability of the existing hire service plus individualised support is proving to be a popular idea. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 1 May 2009 11:55 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Thank you for you all your information.. So far Jaquie, Sarah has not used the touch screen this was something the school had bought up and honestly I just didn't know they were available. I am inclined as you say to wait for the one Darrell was talking about. Jaquie I can remember you talking about Elis business putting programs in for people is this something that is happening? I will have a look at the toughbook as well. I suppose I was thinking the ipod looks groovy, my head is seeing something like in the taxi using it to tell the driver "mum office" or 'home". We have been looking at communication devices for sometime but again which one and I was thinking the computer/touchbook,/notebook/tablet could be that and more. Poor kid she will be celebrating her 21st before I make a decision. Thanks again Gina how do I get to Mac's bolg Cheers Jane Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, May 01, 2009 8:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Gina is right about the weight of the toughbook - it isn't super heavy but is heavy enough that, for example, we think twice about just grabbing and taking it to macdonalds or something like that. I can whip the fujitsu out of my purse easily if we want a quick, light option. Tablet technology is really taking off finally so I think in the next couple of years prices will really come down and there will be more choices. Have you checked out RJ Cooper? He's in the states but just bought out two cheaper tablet communication devices? Check out the mini augi on this page http://www.rjcooper.com/auggie/index.html I haven't used any of his hardware but I can vouch for him being a dude with integrity. Jaquie xx From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 30 April 2009 9:31 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Communication Devices etc Jaquie is right, we got our Fujitsu for $1000 with warranties etc. It is ok for Mac because many of the applications he will use initially are switching and we will likely plug it straight into a bit 32" screen for him here at home. And it is a fab size. Just working on a really good mounting system for it at the moment. The touch screen for Mac will be for specific applications where we want him to start learning that type of feel. I looked at the ToughBooks and liked them also, but figured I didn't need the extra weight just yet. Also, don't forget Darrell mentioned Asus (I think) were bringing out one of their webbooks in a tablet version sometime this year. If she doesn't need touchscreen because she is good at mouse pointing etc that might be a good option too. I assume it can still take external mouse and keyboard in a tablet form. Cheers Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1522 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.11/2089 - Release Date: 04/30/09 17:53:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sat May 2 02:38:42 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 2 May 2009 19:38:42 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> Message-ID: Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son's and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sat May 2 02:57:54 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 2 May 2009 19:57:54 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> Message-ID: <001a01c9cb0c$769e9440$63dbbcc0$@com> Hi Meg, I'm still working with the IT guru to have the place for notes ready hopefully very soon. Will let everyone know when its ready, and I've started putting my notes together too - keen to get those in cyberspace for all to see. Would love to hear about any outcomes from your state teleconference - I'm hoping to keep a national focus on the agenda, hoping we don't lose momentum on that front, so any development news from each state would be of great interest! AAAGGHHH! with the radio story - it still blows my mind that people think its OK to be saying that stuff. There's been some good things going on, but we keep getting reminded on how far we have yet to go. Good luck with everything, and will let you and everyone know when and where the notes/articles and other interesting bits from Canada can go. Hoping for an outcome by next week. Take care Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 2 May 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita J Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son's and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita J Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sat May 2 22:23:00 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 15:23:00 +1000 Subject: FV: FW: Communication Devices etc Message-ID: <001b01c9cbaf$3a26b3a0$ae741ae0$@com> Hi - here's a post from Maria McCaffrey who was on the wrong computer to post to FV directly... She said she'll ring you as well, Jane. Anita J The whole technology thing is in a new era and I think we are all looking, waiting, trying, hoping. The first thing we need is some clarity around the purpose of the device / software and what the person needs to be able to do. For Jamie no one device meets her needs so she needs a variety of different pieces of equipment and software programs across various settings. I am hoping that her tablet laptop which has a touch screen for 'quick response' and various software programs with Big Keys or Neo for access when typing and the ipod touch will meet most of her needs. We bought her laptop from Lenovo but I couldn't recommend them as a company as we faced numerous problems trying to get what was ordered actually provided. The sales guy told us we could have all the functionality we required only to find out after over $3000 was paid that what we needed was impossible to have all in one machine (touch screen operating with finger touch that can be used in day light - it is either a touch screen with stylus that operates outside OR touch screen with stylus and finger touch but no auto adjustment in daylight.) Re the ipod and proloquo2go I have purchased all bits and just waiting for speakers to come from Spectronics. I am not finding the software easy to program as we need to individualise the output for Jamie, also need to find a lot of time to play with it which isn't easy to find at present. If anyone has knowledge of how to program it would be good to share it. Maria From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 2 May 2009 1:01 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc There's LifeTech here in Qld, and as Gina said, Spectronics. There's some families in qld that are really up with the latest technology stuff who can hopefully help here - I'll ask some of them to respond to this on this forum, too Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 2 May 2009 11:34 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Also Spectronics hire out their stuff too - can you access them? Gina On 02/05/2009, at 11:29 AM, Family Voices wrote: DO you have a resource centre in Qld? We have the Independent Living Centre in Perth and you can hire touchscreen devices out for a month just to try them out. There must be an option like this in Q? Yes, Eli's crew, 'Merger of Minds' are designing primarily Boardmaker SDPro boards for people using devices, but will have a go at anything you need and will also refer you to free or cheap online options. They are researching two potentially very cheap touchscreen options right now - I'll let you know as soon as they find something good (they are thinking under $500 is good). If all else fails, Eli's crew might be able to hire a toughbook to you for a (comparatively) reasonable price...let us know if you'd like to explore that. They are just finalising the toughbook hire program this week. We find that so many folks just never get to try these things out, so having the option for short term hire where the timing is dictated by the family not the meagre availability of the existing hire service plus individualised support is proving to be a popular idea. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 1 May 2009 11:55 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Thank you for you all your information.. So far Jaquie, Sarah has not used the touch screen this was something the school had bought up and honestly I just didn't know they were available. I am inclined as you say to wait for the one Darrell was talking about. Jaquie I can remember you talking about Elis business putting programs in for people is this something that is happening? I will have a look at the toughbook as well. I suppose I was thinking the ipod looks groovy, my head is seeing something like in the taxi using it to tell the driver "mum office" or 'home". We have been looking at communication devices for sometime but again which one and I was thinking the computer/touchbook,/notebook/tablet could be that and more. Poor kid she will be celebrating her 21st before I make a decision. Thanks again Gina how do I get to Mac's bolg Cheers Jane Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, May 01, 2009 8:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Gina is right about the weight of the toughbook - it isn't super heavy but is heavy enough that, for example, we think twice about just grabbing and taking it to macdonalds or something like that. I can whip the fujitsu out of my purse easily if we want a quick, light option. Tablet technology is really taking off finally so I think in the next couple of years prices will really come down and there will be more choices. Have you checked out RJ Cooper? He's in the states but just bought out two cheaper tablet communication devices? Check out the mini augi on this page http://www.rjcooper.com/auggie/index.html I haven't used any of his hardware but I can vouch for him being a dude with integrity. Jaquie xx From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 30 April 2009 9:31 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Communication Devices etc Jaquie is right, we got our Fujitsu for $1000 with warranties etc. It is ok for Mac because many of the applications he will use initially are switching and we will likely plug it straight into a bit 32" screen for him here at home. And it is a fab size. Just working on a really good mounting system for it at the moment. The touch screen for Mac will be for specific applications where we want him to start learning that type of feel. I looked at the ToughBooks and liked them also, but figured I didn't need the extra weight just yet. Also, don't forget Darrell mentioned Asus (I think) were bringing out one of their webbooks in a tablet version sometime this year. If she doesn't need touchscreen because she is good at mouse pointing etc that might be a good option too. I assume it can still take external mouse and keyboard in a tablet form. Cheers Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1522 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.11/2089 - Release Date: 04/30/09 17:53:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sat May 2 23:44:17 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 16:44:17 +1000 Subject: FV: Communication Devices etc In-Reply-To: <2CDA582B-F507-46E1-9E6D-37FED0B2A8E3@bigpond.com> References: <000c01c9c98b$d5562700$80027500$@net.au> <001901c9c9e0$3854ab20$a8fe0160$@net.au><002401c9cac5$7f4a8cd0$7ddfa670$@net.au> <2CDA582B-F507-46E1-9E6D-37FED0B2A8E3@bigpond.com> Message-ID: Hi all I will look into Spectronics and ILC in Qld thanks. Gina your web page is wonderful you are an inspiration to me, bit of a realization that I am getting older too which is a bit scary. I went to ALDI yesterday no touch screen but thought the wheelchairs etc were great. A person's home could be set up for a tenth of the cost with no ot assessment and all the other blah blah blah just go shopping!! I realize not suitable for all but great to see. We bought a wii and Alan hasn't got off it yet. He is snowsking as I type working on centeredness hmmmmmm. Sarah and I will have a go tomorrow when he goes to work. Jo I'm so glad you get where I am that is one of the things that is so good about FV. Keep smiling Jane Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 11:34 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Also Spectronics hire out their stuff too - can you access them? Gina On 02/05/2009, at 11:29 AM, Family Voices wrote: DO you have a resource centre in Qld? We have the Independent Living Centre in Perth and you can hire touchscreen devices out for a month just to try them out. There must be an option like this in Q? Yes, Eli's crew, 'Merger of Minds' are designing primarily Boardmaker SDPro boards for people using devices, but will have a go at anything you need and will also refer you to free or cheap online options. They are researching two potentially very cheap touchscreen options right now - I'll let you know as soon as they find something good (they are thinking under $500 is good). If all else fails, Eli's crew might be able to hire a toughbook to you for a (comparatively) reasonable price...let us know if you'd like to explore that. They are just finalising the toughbook hire program this week. We find that so many folks just never get to try these things out, so having the option for short term hire where the timing is dictated by the family not the meagre availability of the existing hire service plus individualised support is proving to be a popular idea. Jaquie :-) From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 1 May 2009 11:55 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Thank you for you all your information.. So far Jaquie, Sarah has not used the touch screen this was something the school had bought up and honestly I just didn't know they were available. I am inclined as you say to wait for the one Darrell was talking about. Jaquie I can remember you talking about Elis business putting programs in for people is this something that is happening? I will have a look at the toughbook as well. I suppose I was thinking the ipod looks groovy, my head is seeing something like in the taxi using it to tell the driver "mum office" or 'home". We have been looking at communication devices for sometime but again which one and I was thinking the computer/touchbook,/notebook/tablet could be that and more. Poor kid she will be celebrating her 21st before I make a decision. Thanks again Gina how do I get to Mac's bolg Cheers Jane Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, May 01, 2009 8:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Gina is right about the weight of the toughbook - it isn't super heavy but is heavy enough that, for example, we think twice about just grabbing and taking it to macdonalds or something like that. I can whip the fujitsu out of my purse easily if we want a quick, light option. Tablet technology is really taking off finally so I think in the next couple of years prices will really come down and there will be more choices. Have you checked out RJ Cooper? He's in the states but just bought out two cheaper tablet communication devices? Check out the mini augi on this page http://www.rjcooper.com/auggie/index.html I haven't used any of his hardware but I can vouch for him being a dude with integrity. Jaquie xx From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 30 April 2009 9:31 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Communication Devices etc Jaquie is right, we got our Fujitsu for $1000 with warranties etc. It is ok for Mac because many of the applications he will use initially are switching and we will likely plug it straight into a bit 32" screen for him here at home. And it is a fab size. Just working on a really good mounting system for it at the moment. The touch screen for Mac will be for specific applications where we want him to start learning that type of feel. I looked at the ToughBooks and liked them also, but figured I didn't need the extra weight just yet. Also, don't forget Darrell mentioned Asus (I think) were bringing out one of their webbooks in a tablet version sometime this year. If she doesn't need touchscreen because she is good at mouse pointing etc that might be a good option too. I assume it can still take external mouse and keyboard in a tablet form. Cheers Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1522 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.11/2089 - Release Date: 04/30/09 17:53:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sat May 2 23:48:20 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 16:48:20 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> Message-ID: HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 From familyvoices at inpress.pledgonline.com Sun May 3 00:29:49 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 17:29:49 +1000 Subject: FV: FW: Communication Devices etc In-Reply-To: <001b01c9cbaf$3a26b3a0$ae741ae0$@com> Message-ID: Hi Maria Are you a member of the Proloquo2Go Community (email group). You can join here http://lists.assistiveware.net/mailman/listinfo/proloquo2go_community There are a number of people who have done the beta testing phase of p2go with their kids or for themselves and are now using the product so have lots of experience and keen to help others troubleshoot. Also, the developers are frequent posters and problem solvers too. They have posted a number of great portable (& rechargeable) speaker options for the iphone (and some from Cyanics.net which are look great for any ipod) so some really useful information. Regards Gina Gina Wilson-Burns 110a FLANNERY LANE, TAPITALLEE NSW 2540 TELEPHONE : 0412 022014 or 02 44460037 EMAIL: GinaWB at internode.on.net BLOG: http://inkyed.wordpress.com _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 3:23 PM To: familyvoices at inpress.pledgonline.com Subject: FV: FW: Communication Devices etc Hi - here's a post from Maria McCaffrey who was on the wrong computer to post to FV directly... She said she'll ring you as well, Jane. Anita :-) The whole technology thing is in a new era and I think we are all looking, waiting, trying, hoping. The first thing we need is some clarity around the purpose of the device / software and what the person needs to be able to do. For Jamie no one device meets her needs so she needs a variety of different pieces of equipment and software programs across various settings. I am hoping that her tablet laptop which has a touch screen for 'quick response' and various software programs with Big Keys or Neo for access when typing and the ipod touch will meet most of her needs. We bought her laptop from Lenovo but I couldn't recommend them as a company as we faced numerous problems trying to get what was ordered actually provided. The sales guy told us we could have all the functionality we required only to find out after over $3000 was paid that what we needed was impossible to have all in one machine (touch screen operating with finger touch that can be used in day light - it is either a touch screen with stylus that operates outside OR touch screen with stylus and finger touch but no auto adjustment in daylight.) Re the ipod and proloquo2go I have purchased all bits and just waiting for speakers to come from Spectronics. I am not finding the software easy to program as we need to individualise the output for Jamie, also need to find a lot of time to play with it which isn't easy to find at present. If anyone has knowledge of how to program it would be good to share it. Maria From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 2 May 2009 1:01 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc There's LifeTech here in Qld, and as Gina said, Spectronics. There's some families in qld that are really up with the latest technology stuff who can hopefully help here - I'll ask some of them to respond to this on this forum, too Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 2 May 2009 11:34 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Also Spectronics hire out their stuff too - can you access them? Gina On 02/05/2009, at 11:29 AM, Family Voices wrote: DO you have a resource centre in Qld? We have the Independent Living Centre in Perth and you can hire touchscreen devices out for a month just to try them out. There must be an option like this in Q? Yes, Eli's crew, 'Merger of Minds' are designing primarily Boardmaker SDPro boards for people using devices, but will have a go at anything you need and will also refer you to free or cheap online options. They are researching two potentially very cheap touchscreen options right now - I'll let you know as soon as they find something good (they are thinking under $500 is good). If all else fails, Eli's crew might be able to hire a toughbook to you for a (comparatively) reasonable price...let us know if you'd like to explore that. They are just finalising the toughbook hire program this week. We find that so many folks just never get to try these things out, so having the option for short term hire where the timing is dictated by the family not the meagre availability of the existing hire service plus individualised support is proving to be a popular idea. Jaquie :-) From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 1 May 2009 11:55 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Thank you for you all your information.. So far Jaquie, Sarah has not used the touch screen this was something the school had bought up and honestly I just didn't know they were available. I am inclined as you say to wait for the one Darrell was talking about. Jaquie I can remember you talking about Elis business putting programs in for people is this something that is happening? I will have a look at the toughbook as well. I suppose I was thinking the ipod looks groovy, my head is seeing something like in the taxi using it to tell the driver "mum office" or 'home". We have been looking at communication devices for sometime but again which one and I was thinking the computer/touchbook,/notebook/tablet could be that and more. Poor kid she will be celebrating her 21st before I make a decision. Thanks again Gina how do I get to Mac's bolg Cheers Jane Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, May 01, 2009 8:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Gina is right about the weight of the toughbook - it isn't super heavy but is heavy enough that, for example, we think twice about just grabbing and taking it to macdonalds or something like that. I can whip the fujitsu out of my purse easily if we want a quick, light option. Tablet technology is really taking off finally so I think in the next couple of years prices will really come down and there will be more choices. Have you checked out RJ Cooper? He's in the states but just bought out two cheaper tablet communication devices? Check out the mini augi on this page http://www.rjcooper.com/auggie/index.html I haven't used any of his hardware but I can vouch for him being a dude with integrity. Jaquie xx From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 30 April 2009 9:31 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Communication Devices etc Jaquie is right, we got our Fujitsu for $1000 with warranties etc. It is ok for Mac because many of the applications he will use initially are switching and we will likely plug it straight into a bit 32" screen for him here at home. And it is a fab size. Just working on a really good mounting system for it at the moment. The touch screen for Mac will be for specific applications where we want him to start learning that type of feel. I looked at the ToughBooks and liked them also, but figured I didn't need the extra weight just yet. Also, don't forget Darrell mentioned Asus (I think) were bringing out one of their webbooks in a tablet version sometime this year. If she doesn't need touchscreen because she is good at mouse pointing etc that might be a good option too. I assume it can still take external mouse and keyboard in a tablet form. Cheers Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1522 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.11/2089 - Release Date: 04/30/09 17:53:00 _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 01:24:54 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 18:24:54 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> Message-ID: <4CF87F4A6747453E93D80FB114AFF44A@SweeneyFamily> Hi Jane Pretty overwhelming at the moment, doing the last minute fix it jobs to put the house on the market and research into schools on the south coast. Our zoned school has 7 support units on site !!!!! The community is also mostly a holiday, retirement community so I also have concerns about Jos establishing a life independent of us with people her own age....I'm sure it will all work out. I tend to be an over planner so I'm hoping most of what I think may happen and cook up contingencies for wont occur. I try to think, take one thing at a time. Cheers, Meg -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 4:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 From familyvoices at inpress.pledgonline.com Sun May 3 02:32:22 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 17:32:22 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> Message-ID: <001401c9cbd2$0fef9520$2fcebf60$@net.au> Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 From familyvoices at inpress.pledgonline.com Sun May 3 02:54:43 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 19:54:43 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <001401c9cbd2$0fef9520$2fcebf60$@net.au> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> Message-ID: <20B1AC8494B4490EBE95659FA428AA5D@dell91> Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 03:53:11 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 20:53:11 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <20B1AC8494B4490EBE95659FA428AA5D@dell91> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> Message-ID: <001a01c9cbdd$5a37b120$0ea71360$@com> Hi , I also worry about institutionalisation coming back in by stealth. We have the situation of Youngcare where millions of corporate dollars and heaps of community events are donating their proceeds to this nursing home for young people. Somehow there was outrage at young people in aged care facilities but its OK to be segregated and congregated with people your own age?? I believe you're right Jo, they have never really gone away...and it doesn't take much for them to gain ground again either if there isn't any rigorous advocacy done around it. Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 7:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 04:39:53 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 21:39:53 +1000 Subject: FV: Re Meg...Good luck and take care References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <4CF87F4A6747453E93D80FB114AFF44A@SweeneyFamily> Message-ID: HI Meg Good luck with all your planning and moving. All very brave of you. I am a person who often gets overwhelmed with too much on my plate and I like to remember the phrase Deb Rouget gave me some years ago "How do you eat an elephant?" One bite at a time... I think it is worth thinking about. When you get settled I'll get that information to you about Daylesford. I won't forget. take care Maureen ----- Original Message ----- From: "Family Voices" To: Sent: Sunday, May 03, 2009 6:24 PM Subject: Re: FV: Reciprocal visit and inclusion movement - Meg > Hi Jane > > Pretty overwhelming at the moment, doing the last minute fix it jobs to > put > the house on the market and research into schools on the south coast. Our > zoned school has 7 support units on site !!!!! The community is also > mostly > a holiday, retirement community so I also have concerns about Jos > establishing a life independent of us with people her own age....I'm sure > it > will all work out. I tend to be an over planner so I'm hoping most of what > I > think may happen and cook up contingencies for wont occur. > > I try to think, take one thing at a time. > > Cheers, Meg > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 3 May 2009 4:48 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: Reciprocal visit and inclusion movement - Meg > > HI Meg > > I think you are so right in what you say, please don't crash! There is > something very scary about the Carers reports and what is being said. > Also > the lack of knowledge, understanding and awareness of the past. The > history > is not that old but either forgotten or not spoken loudly enough. > > How's the move going? > > Jane Warner/Hudson > > 07 46714737 > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Saturday, May 02, 2009 7:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: FV: Reciprocal visit and inclusion movement - Meg > > Hi Anita & everyone, > > > > Anytime Mondays or Fridays are best for me in relation to a future > teleconference that may happen. I have notes ready to post once I know > where to post them. > > > > NSW participants in the exchange are having a teleconference with other > interested people from the state on Tuesday evening this week. > > > > I'm interested in discussing the reciprocal visit so put forward the > idea of a thread in relation to this or specific place to post comments > to further discussion/opportunities in relation to making this a > reality. I know some comments have already been posted however I feel a > more structured process may be required. > > > > As an aside > > > > I caught an announcer on radio national today interviewing people in > relation to the Federal carer's report that was about to be released. > Lots of people were calling in with horror stories about the > difficulties faced when looking after their loved one. He said "doesn't > this mean that it is time we went back to institutionalisation" I nearly > crashed the car. To me it is like saying rich white people are feeling > the financial pinch so we should return to slavery or South Africa is > having some political troubles so we had better return to apatite or > there aren't enough workers in manual jobs so return to child labor. > These comments would never, ever be made. It just shows how far we have > to go in relation to the generic populations attitudes to our family > members and the level of ignorance held in relation to the life outcomes > of an institutional existence. > > > > PS everyone, you have probably realised that spelling and grammar are > not my strong points so I hope you will ignore any blunders as I will be > completely unaware. > > > > Cheers, > > > > Megs > > > > > > ________________________________ > > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Monday, 27 April 2009 11:30 AM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: Reciprocal visit and inclusion movement > > > > Hi everyone, > > > > It seems that it may be premature to hold the teleconference this week; > many of those who travelled can't participate for various reasons. It > would be really difficult to run this with only one or two participating > that have travelled. So, I'll postpone the teleconference until after > the forum for notes etc is in place for those of you who are "listening" > and are keen to be involved and get information on what we experienced. > This will also hopefully be useful for those who travelled to > consolidate the experiences. Our IT guru here at Mamre will put > together a forum hopefully within the week. I'll attempt to put in links > for specific subjects and we can put the link to the forum on the Family > Voices website. I'll let you know when that is up and running and will > start putting notes, articles and other bits that were gathered on > there. Anyone can then add to that information so hopefully everything > will be captured. > > > > I just want to say that the discussions are fantastic, and best of luck > with the Early Intervention paper. If it gets accepted, I'd like to > support some families from Queensland to attend so please keep us > posted! > > > > Anita :-) > > > > > > Anita Speed > Coordinator, Parent Program > > cid:image001.jpg at 01C986D9.9CB06180 > > The information contained in the above e-mail message or messages (which > includes any attachments) is confidential and may be legally privileged. > It is intended only for the use of the person or entity to which it is > addressed. If you are not the addressee any form of disclosure, copying, > modification, distribution or any action taken or omitted in reliance on > the information is unauthorised. Opinions contained in the message(s) do > not necessarily reflect the opinions of Mamre Association Incorporated. > If you received this communication in error, please notify the sender > immediately and delete it from your computer system network. > > > > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Friday, 17 April 2009 4:30 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: Reciprocal visit and inclusion movement > > > > Hello everyone, > > > > I have been silent so far, only just recovering from the adventure and > setting back to work and home life. > > > > I cannot participate in the teleconference on Wednesday 29th as I will > be at work however look forward to any further outcomes. > > > > I'll be posting some belated comments in relation to previous > discussions so .talk soon ! > > > > Meg Sweeney > > > > ________________________________ > > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Friday, 17 April 2009 11:09 AM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: Reciprocal visit and inclusion movement > > > > HI Catherine > > How would the VALID conference in Geelong early in the new year sound? > for some people it might be excellent. > > > > Deb held the One Person At a Time conference in November last year. She > would be the person to speak to regarding future planning. > >>From a personal experience, I feel the One Person At A Time conference > would be ideal as it is ALL about Inclusion and very geared to parents. > > > > Just thoughts................. > > Maureen > > ----- Original Message ----- > > From: Family Voices > > > To: familyvoices at inpress.pledgonline.com > > Sent: Friday, April 17, 2009 8:41 AM > > Subject: Re: FV: Reciprocal visit and inclusion movement > > > > Hi there, > > I think this email went astray, as I may have clicked the wrong > button, so apologies if some of you have received it previously. > > > > In reply to the question you posed Darrell, a conference is > certainly one way of 'spreading the message' which I think is important, > plus it gives us an opportunity to utilise the wealth of knowledge and > experience that will come with the Canadians. I can see Robin, Wendy and > Bruce talking about the Rotary Employment Partnership, Sheena and her > mum telling Sheena's story, Laura or a parent, describing the Navigator > initiative and possibly another parent presenting the Inclusive post > secondary experience, just to name a few. We would also include > Australian parents as presenters, as we too have wonderful examples to > share. A conference isn't absolutely necessary, but it is one way of > bringing a lot of stuff together and sharing it with many more people > than we will otherwise reach. > > > > Perhaps we could tag the trip onto a conference that will be > happening anyway. When is the next One person at a time conference > happening in Victoria? How about a CRU conference in Qld? Any others > that people may be aware of? > > > > There will be an advocacy conference coordinated by the > Disability Advocacy Network Australia (DANA) in March 2010. It will be > the third national advocacy conference to be held and at this stage it > looks like it will be held in Sydney. I am on the Board of DANA and can > explore this idea. As so much of the Canadian exchange initiative is > linked to advocacy, I can see a synergy happening. We could run an > Inclusion and parent leadership stream across the two days. Having > parents at the event would be a new experience for the sector, but I see > that as a good thing. > > > > Anyway, just some thoughts to add to the pot. > > > > Catherine > > > > > > Catherine > > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Tuesday, 14 April 2009 10:16 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: Reciprocal visit and inclusion movement > > > > Hi all, > > It has been such a pleasure to sit back and read all of the > collective wisdom that is flowing through these discussions. At first I > thought we would put up the site to get the discussion rolling on Canada > but what flowed was so beautiful that I just sat back and said - wow - > let that one flow! > > > > As to a Family Voices page, there is one up and the threads can > (and are already) archived according to thread (topic) as well as > author, date so each discussion can be followed or accessed separately. > Ruben is currently working on Wiki - whatever that is - for you. Happy > though, if someone else want to take it over. I only started it to get > the conversation rolling, and boy did it ever! > > > > Just a few early thoughts as to reciprocal visit, inclusion, > leadership & stuff: > > > > 1. If > > a. What we experienced was part of Bruce's leadership > program, > > b. Then bringing some of Canada's family leaders here (2 > by 2's in the Arc model as we did to Canada) - have them hosted in each > State by visitor to Canada and friends and have them visit what our son' > s and daughters experience and THEN meet collectively (maybe State by > State or Nationally) to discuss each of these in terms of a few central > issues (as we did following the visits to each of Alberta's service > structures). > > 2. Then we have returned the favour AND built another > layer of leadership development and exchange at each local level. (Think > global, act local.) > > 3. I see the listening to our critique without defense as > one of the biggest things we got from the Canadians and I believe it was > our "gift" to them as well. Their sharing the same here would repay > these gifts in our mutual learning from one another. > > 4. Of course, we need to build in "play time" for the > Canadians and other agendas are possible, such as Conference to end the > event. Is that what you were suggesting Catherine? > > > > As I see it, inclusion is our journey as well as our > destination, family leadership and alliances drive the train and our > collective energies are its fuel. If this discussion is any gauge, there > is much fuel in the tank. > > Kindest thoughts. > > Darrell > > > > > > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Tuesday, 14 April 2009 2:17 PM > To: familyvoices at inpress.pledgonline.com > Subject: FV: Reciprocal visit and inclusion movement > > > > Hi everyone, > > > > What fabulous discussion there has been! I'm really awed by the > wisdom of this group and am excited about what's possible. I wonder if > its time to talk now especially about "what now" ie the inclusion > movement in Australia, and the reciprocal visit. > > > > I'm setting up a conference call with Telstra for 1pm Wednesday > 29 April for anyone who wants to participate. Let's use the email to > plan for that teleconference and start with some of the ideas of: > > > > 1. Do we plan for the reciprocal visit first and do the > movement/leadership development stuff later and separately? > > 2. If we do the visit, what do we want to achieve from it? > > 3. What does it look like, and how can the Canadians help us do > it? > > 4. Who can do what, when and where > > > > There will be heaps more stuff, but this is just to kick start > the conversation. If we can get all of this resolved by email and the > discussions take us further along the path, we can decide whether we > need to go ahead with the teleconference at the time. > > > > On another note, I think its really important that we get > somewhere set up where we can put our notes from the Canada workshops, > visits, conference etc in a way that everyone can access and add to > them. The others who didn't go can then can get onto the same page and > know what we are talking about before contributing to the discussions. > This needs to happen really soon. It would make sense to put that > place on the Family Voices page that Darrell and Rueben set up. > Otherwise, Mamre can host a site, or we can do something independently > in a wiki form. Gina and I have been having that discussion so if > everyone's happy, we'll continue to work on that bit together. Will > keep you posted once we hear from Darrell. > > > > Anita :-) > > > > > > > > Anita Speed > Coordinator, Parent Program > > cid:image001.jpg at 01C986D9.9CB06180 > > The information contained in the above e-mail message or > messages (which includes any attachments) is confidential and may be > legally privileged. It is intended only for the use of the person or > entity to which it is addressed. If you are not the addressee any form > of disclosure, copying, modification, distribution or any action taken > or omitted in reliance on the information is unauthorised. Opinions > contained in the message(s) do not necessarily reflect the opinions of > Mamre Association Incorporated. If you received this communication in > error, please notify the sender immediately and delete it from your > computer system network. > > > > > > __________ Information from ESET NOD32 Antivirus, version of > virus signature database 4005 (20090413) __________ > > The message was checked by ESET NOD32 Antivirus. > > http://www.eset.com > > > > __________ Information from ESET NOD32 Antivirus, version of > virus signature database 4006 (20090414) __________ > > The message was checked by ESET NOD32 Antivirus. > > http://www.eset.com > > !DSPAM:585,49e82268256931336712104! > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 > 14:23:00 > > > > From familyvoices at inpress.pledgonline.com Sun May 3 05:03:23 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 20:03:23 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <001a01c9cbdd$5a37b120$0ea71360$@com> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> <001a01c9cbdd$5a37b120$0ea71360$@com> Message-ID: <003701c9cbe7$29046e90$7b0d4bb0$@com> Sorry to say, we have not moved "forward" far at all, and yet a million miles. Institutions are not buildings or systems holding our children and the children of our ancestors, but prisons of our collective minds across time. We have failed collectively to love and love enough on a large enough canvass to banish the institution from the world's thinking but we have learned enough and loved enough to banish it from our lives. Let us keep that love alive, always. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 6:53 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi , I also worry about institutionalisation coming back in by stealth. We have the situation of Youngcare where millions of corporate dollars and heaps of community events are donating their proceeds to this nursing home for young people. Somehow there was outrage at young people in aged care facilities but its OK to be segregated and congregated with people your own age?? I believe you're right Jo, they have never really gone away...and it doesn't take much for them to gain ground again either if there isn't any rigorous advocacy done around it. Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 7:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 05:15:18 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 20:15:18 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <20B1AC8494B4490EBE95659FA428AA5D@dell91> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> Message-ID: <001201c9cbe8$d3361d40$79a257c0$@net.au> All the stuff I have seen says that institutions are pretty expensive to run. I think its more to do with this issue of feeling the need for long term, nailed down security for a person with a disability. I used to feel that too, very strongly, until I realised recently that I no longer have that fear (thanks to microboards...). A good life just isn't compatible with most of our systems - we need them to change in response to the results of inclusion if we are to progress. We just had our application for community living funding turned down because it was too open ended.....if we really live this deeply then we won't be saying for sure where Eli will be living, and with who, in 10 years time. The system couldn't deal with that degree of uncertainty even though otherwise Eli's plan was watertight and even though its aim was inclusive living. If we don't want institutions, then what do we want? The majority of families I work with want maximum, 100%, nailed down security AND 100% good inclusive free life - actually the two things are incompatible. With inclusion and freedom come risks, an unknown future...possibilities, anxieties....how do we deal with all of these things? Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 5:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 05:29:51 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 20:29:51 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <20B1AC8494B4490EBE95659FA428AA5D@dell91> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> Message-ID: <003601c9cbea$dbb5cb80$93216280$@net.au> Hi Jane, I think it is a combination of things, economics is one aspect, one of the others is what people know. I didn't include Daniel in Mainstream Schooling because I believed in it - that came about by accident. I thought sending Dan to a school in another town 30 minutes away to a segregated setting was the best place for him to go - after 12 months of attending Forums, Seminars, speaking to principals of private, independent and public schools, speaking to principals of Special Education Units, Centres and Schools, talking with the specialists at the Child Development Centre (the last one said Dan would not be well enough to attend ANY school) and parents of children with disabilities I came up with the conclusion that Dan would be safer, have the right stimulation (hyrdro therapy, sensory room), nurse, well trained staff etc.....we've heard the same story dozens of times, if he attended a special school in another town. I thought I had done my homework and it was only by sheer luck that Dan ended up going to our local school 500 metres from our home - thank goodness. I guess my point is that I had purposely gone out to talk to a variety of people from different education settings including parents and truly believed I was making the right choice. If my past experiences of people with a disability were that they "went" somewhere else to people who have the "expertise" and I had no exposure to someone with a disability at my school, in my street, in my community etc, what other conclusions could I come up with. I'm in awe when I meet mums and dads whose starting point is quite different to mine and it fascinates me that it is something other parents just know - I wonder what I missed in those early days. It wasn't until attending Canada that my belief in Inclusion was cemented. I had vacillated over the years given the overwhelming degree of negativity and opposition within the school at the administrative level and many times with the teacher/s, wondering if it was me that had the problem. I thank the parents of Daniel's peers who constantly came up to Gordon and myself thanking us for putting Daniel in their child's class because they knew their children would not grow up frightened of people with disabilities as they themselves were and that their children would learn how to interact appropriately (that was a BIG learning curve for me - this inclusion stuff was reciprocal) but it was all stuff that I had to learn. A long story here to get to a point I know, but I guess my point is that here I was directly affected by having a baby with a disability and I would do no harm to my precious baby - yet I almost did - most people in our community have no real connection with people with disabilities and are at the point of where I was when we first started our journey, so I don't think it's just about a lack of "Will". Governments NEED to be MADE to understand why it is good for everyone to be included in community life - I just haven't worked out how. Economics wise, well I guess I can only draw from my experience of talking to people who have worked in nursing homes and who now work for me privately where they have told me that in the nursing homes they get 15 minutes to shower a person, here they have an hour because that's how long it takes. A friend of mine handed her funding over to agencies (DSC told her they would fund the agency commensurate with the appropriate hourly rate if she did this) only to find that now she has no choice over who comes into their home and if the support worker phones in sick the agency has no obligation to send out a replacement and the onus is on the parents to find the support (she works and this has made things very tricky as you can imagine). So with my limited understanding of how things are run in agencies I think a lot of it does come down to economics. Someone else may have more experience in this area and share their thoughts. I agree with you, the fight for the most basic of needs is shameful, there is no excuse where governments are not providing them. Oh, and the bit where I said (interesting, considering it was a government agency who convinced me that inclusion was the way to go), I should have said it is a government agency that has been providing information from overseas speakers for the past 17 years on inclusion which has been one of the things assisting me to believe in inclusion - it's how I got to meet Bruce. And yes, it is wonderful to have these conversations here - thanks Jane Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 5:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 05:35:57 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 22:35:57 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <001a01c9cbdd$5a37b120$0ea71360$@com> Message-ID: This issue is where I get really confused. I loved living on University Campus, where I lived with heaps of other young people 'just like me' and others 'quite a bit different to me'. The fact is. young people like living with young people and at Canberra Uni some remained living on campus for their entire extended university experience.some for 9 years. Very few young adults, given the choice, would remain living with their parents. As I understand it, the majority of the young people currently living in nursing homes are physically affected but with full cognition. So if you could live in a 100% accessible environment where you had hydrotherapy pools (accessible), cinema rooms, gyms, a Wii room, fabbo computer access - a vibrant, exciting, diverse place with choices and options then surely this is the lesser of the two evils to living in an aged care facility. What is another current alternative? A group home with none of the cool facilities of a Young Persons 'nursing home' (due to economies of scale), which may or may not be accessible, where transport provisions are ad hoc where you may or may not choose who you live with, more isolation? For me the fight is for choice? But I would like to see a change to the current YoungCare model where it also provides accommodation for young people without a disability where part of their board may be subsidized by them undertaking support or caregiver roles for a certain number of hours per week, or they may pay a full rent/board to live their with a mate who may have a disability or because that is where they want to live because it might be a great place to live. And another addendum. residents of a Young Care facility should still be able to work if they are able and then that is simply their place of residence. Oh, and my last one. to establish a plan whereby residents could be encouraged through building friendships to move to more independent living environments and be supported to do so if that was their 'choice' to pursue that. Another thing we need to remember is that 'wheelchairs are not a sign of segregation'. For example if you have a group of people in wheelchairs hanging out with one another by choice, that is not segregation, that is choice. You will still have diversity within the group but there is a basic physical element to the fact if you are in a wheelchair you are automatically denied access to a large proportion of your physical environment simply because of access issues. You often have a synergy brought about by personal experiences and challenges, you may have similar interests you might not. Wheelchairs should be thought of as no different to shoes. I have met a young lady who lives nearby who sadly, as the result of a massive asthma attack, sustained a significant brain injury at 25years of age and who, despite having had an independent life and about to be married, is now back in the care of her parents. This is not normal or natural. She is completely immobile, tube fed, no speech and does get sick reasonably regularly. They live lives that make me very sad. They are isolated, her parents have pretty much, through their own stress and grief, turned all her friends (and theirs) away so that now no one comes to visit. Her care workers that come to their house are pretty revolting. They will not interact with her, nor respect her basic right to a pleasant enjoyable day - they don't even like her having the TV on because it annoys them. There has been no effort to establish a communication system for her. The number of people under one roof does not determine whether or not a place is an 'undesirable living situation' or institution as we refer to in the 'bad old days'. the type of care does. This girl deserves a better life. Her sisters fight as best they can for her to have a better life, but there are no real options. A YoungCare model of care would open up her world. Her friends could visit again, her mother can return to being her mother not her nurse, carer, project manager, accountant and staff supervisor (none of which she does particularly well, but she can do 'being a mum' well). Institutions of old are a bad idea, but I am not as scared of really clever, accessible and fun living arrangements for anyone. Even aged care facilities need a total overhaul if we are going to accept that congregated living arrangement is OK - many do not fit my model where vibrancy, fun, respect and choice are paramount. Not all families can cope or manage with providing care for a profoundly disabled person. It is never appropriate for a 20 year old to live in an aged care facility - so at times we need to help create middle ground options and my personal opinion is that is what YoungCare are trying to do. I don't believe their intent is sinister but it certainly will need people to be vigilant to ensure it doesn't' turn into something it ought not. I am sure many of my views do not sit well with a lot of people, but be mindful I come very much from the viewpoint of physical disabilities. In the current state of affairs I am faced with a very real possibility of Mac still being at home and, among other things, me still changing nappies on him when he is 40 years old . I can't even imagine the indignance he will no doubt feel as a result of that - so you can see why there has to be more options for him in all this and why we fight for them. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:53 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi , I also worry about institutionalisation coming back in by stealth. We have the situation of Youngcare where millions of corporate dollars and heaps of community events are donating their proceeds to this nursing home for young people. Somehow there was outrage at young people in aged care facilities but its OK to be segregated and congregated with people your own age?? I believe you're right Jo, they have never really gone away...and it doesn't take much for them to gain ground again either if there isn't any rigorous advocacy done around it. Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 7:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 06:07:53 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 23:07:53 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: References: <001a01c9cbdd$5a37b120$0ea71360$@com> Message-ID: <000001c9cbf0$2b509260$81f1b720$@com> Hi Gina, At no point do I believe that Youngcare has sinister motives - I firmly believe they think they are doing the right thing and for good reasons. Taking your point, I certainly don't think its cut and dry and agree with having options of choice for each individual and their circumstances, if that actually came to be. It's just that history has shown us that people with disabilities are inherently devalued in the eyes of our western society and therefore congregating and segregating people with disabilities has an adverse affect over time. I also take your point that often people using the Youngcare model may have full cognition, but it may only be a matter of time when that model is adopted by governments and other services and suddenly that setting is what's left on offer. This model is quick and easy, some families can stop planning and the slippery slope has begun. I'm also referring to the cohort of young people who could be parents themselves, not necessarily just student age people, who have left their family homes (husbands and kids) to live in a place where they receive the support they require, instead of the support coming to them in their own homes and communities. That's the bit I struggle with. Youngcare began with this very situation. Having said all of that, I am really mindful of the complexities of all of this. I am only putting out respectfully a point of view and hope it doesn't offend anyone. I just hope that choices made by any family or person are fully informed and considered from a number of angles. Many families aren't given those angles to consider which is of deep concern to me. Take care Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 10:36 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg This issue is where I get really confused. I loved living on University Campus, where I lived with heaps of other young people 'just like me' and others 'quite a bit different to me'. The fact is. young people like living with young people and at Canberra Uni some remained living on campus for their entire extended university experience.some for 9 years. Very few young adults, given the choice, would remain living with their parents. As I understand it, the majority of the young people currently living in nursing homes are physically affected but with full cognition. So if you could live in a 100% accessible environment where you had hydrotherapy pools (accessible), cinema rooms, gyms, a Wii room, fabbo computer access - a vibrant, exciting, diverse place with choices and options then surely this is the lesser of the two evils to living in an aged care facility. What is another current alternative? A group home with none of the cool facilities of a Young Persons 'nursing home' (due to economies of scale), which may or may not be accessible, where transport provisions are ad hoc where you may or may not choose who you live with, more isolation? For me the fight is for choice? But I would like to see a change to the current YoungCare model where it also provides accommodation for young people without a disability where part of their board may be subsidized by them undertaking support or caregiver roles for a certain number of hours per week, or they may pay a full rent/board to live their with a mate who may have a disability or because that is where they want to live because it might be a great place to live. And another addendum. residents of a Young Care facility should still be able to work if they are able and then that is simply their place of residence. Oh, and my last one. to establish a plan whereby residents could be encouraged through building friendships to move to more independent living environments and be supported to do so if that was their 'choice' to pursue that. Another thing we need to remember is that 'wheelchairs are not a sign of segregation'. For example if you have a group of people in wheelchairs hanging out with one another by choice, that is not segregation, that is choice. You will still have diversity within the group but there is a basic physical element to the fact if you are in a wheelchair you are automatically denied access to a large proportion of your physical environment simply because of access issues. You often have a synergy brought about by personal experiences and challenges, you may have similar interests you might not. Wheelchairs should be thought of as no different to shoes. I have met a young lady who lives nearby who sadly, as the result of a massive asthma attack, sustained a significant brain injury at 25years of age and who, despite having had an independent life and about to be married, is now back in the care of her parents. This is not normal or natural. She is completely immobile, tube fed, no speech and does get sick reasonably regularly. They live lives that make me very sad. They are isolated, her parents have pretty much, through their own stress and grief, turned all her friends (and theirs) away so that now no one comes to visit. Her care workers that come to their house are pretty revolting. They will not interact with her, nor respect her basic right to a pleasant enjoyable day - they don't even like her having the TV on because it annoys them. There has been no effort to establish a communication system for her. The number of people under one roof does not determine whether or not a place is an 'undesirable living situation' or institution as we refer to in the 'bad old days'. the type of care does. This girl deserves a better life. Her sisters fight as best they can for her to have a better life, but there are no real options. A YoungCare model of care would open up her world. Her friends could visit again, her mother can return to being her mother not her nurse, carer, project manager, accountant and staff supervisor (none of which she does particularly well, but she can do 'being a mum' well). Institutions of old are a bad idea, but I am not as scared of really clever, accessible and fun living arrangements for anyone. Even aged care facilities need a total overhaul if we are going to accept that congregated living arrangement is OK - many do not fit my model where vibrancy, fun, respect and choice are paramount. Not all families can cope or manage with providing care for a profoundly disabled person. It is never appropriate for a 20 year old to live in an aged care facility - so at times we need to help create middle ground options and my personal opinion is that is what YoungCare are trying to do. I don't believe their intent is sinister but it certainly will need people to be vigilant to ensure it doesn't' turn into something it ought not. I am sure many of my views do not sit well with a lot of people, but be mindful I come very much from the viewpoint of physical disabilities. In the current state of affairs I am faced with a very real possibility of Mac still being at home and, among other things, me still changing nappies on him when he is 40 years old . I can't even imagine the indignance he will no doubt feel as a result of that - so you can see why there has to be more options for him in all this and why we fight for them. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:53 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi , I also worry about institutionalisation coming back in by stealth. We have the situation of Youngcare where millions of corporate dollars and heaps of community events are donating their proceeds to this nursing home for young people. Somehow there was outrage at young people in aged care facilities but its OK to be segregated and congregated with people your own age?? I believe you're right Jo, they have never really gone away...and it doesn't take much for them to gain ground again either if there isn't any rigorous advocacy done around it. Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 7:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 06:30:57 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 21:30:57 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <001201c9cbe8$d3361d40$79a257c0$@net.au> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> <001201c9cbe8$d3361d40$79a257c0$@net.au> Message-ID: <003e01c9cbf3$644a1d40$2cde57c0$@net.au> Hi Jaquie, I am so sorry to hear your application was turned down and will catch up with you soon to find out what the next steps will be. In relation to parents feeling the need for long term, nailed down security - do you mean buildings, funding or both? I guess the stakes are so high (vulnerability) that, for me I want to put into place as much as I possibly can for Daniel - friends, family, financial security, housing and so on. After being in Canada and seeing and hearing of the support families receive without having to fight tooth and nail for, which is commensurate with their family members needs I believe more than ever that we need to demand the same. It would then mean we would be free to focus on supporting where a person will work, who they will live with (Brenda lived on her own with 24/7 paid support) and so on. Our starting point is fear at not getting helped - how many 70/80 year olds have we met over time who are still caring for their son or daughter without ANY support because they are not in enough crisis or are on a waiting list for an Agency to help out the maximum of 3hrs per week! I do want security in knowing that Daniel will be able to choose to live where he would like without the risk of being institutionalised. I do want friends in his life where they will be involved but not expected to take on a support workers role. Daniel will and does experience anxieties and difficulties at varying degrees in his life and will continue to do so but for me to relax about where he might live beyond my capacities of caring for him will not be possible until I know he'll have the funding to fit his need. With the nursing homes/institutions snapping at our heels I feel this is essential along with a supportive microboard who will aim to provide for all of his other needs - I don't have a view that I should be able to say where Dan's home address will be in 10 years time is necessary, however I do want the funds commensurate with his needs to enable him to have the free will of where he chooses to live - WA - North/South, SA.... wherever. I agree we need systems to change - I think what Maureen said about that elephant might help - one bite at a time! Can I help you bite? Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:15 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg All the stuff I have seen says that institutions are pretty expensive to run. I think its more to do with this issue of feeling the need for long term, nailed down security for a person with a disability. I used to feel that too, very strongly, until I realised recently that I no longer have that fear (thanks to microboards...). A good life just isn't compatible with most of our systems - we need them to change in response to the results of inclusion if we are to progress. We just had our application for community living funding turned down because it was too open ended.....if we really live this deeply then we won't be saying for sure where Eli will be living, and with who, in 10 years time. The system couldn't deal with that degree of uncertainty even though otherwise Eli's plan was watertight and even though its aim was inclusive living. If we don't want institutions, then what do we want? The majority of families I work with want maximum, 100%, nailed down security AND 100% good inclusive free life - actually the two things are incompatible. With inclusion and freedom come risks, an unknown future...possibilities, anxieties....how do we deal with all of these things? Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 5:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 06:38:31 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 23:38:31 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <000001c9cbf0$2b509260$81f1b720$@com> Message-ID: Anita Absolutely agree with you. At the heart of it is invest in the person with the disability and the rest follows. There is so much that needs to be changed it makes my head hurt. often. Bill Shorten is starting the grasp many of the concepts. here's the link to his speech at the National Press Club for those who haven't already had access to it. He spoke not long after we got back from Canada so many of us were likely quite busy. http://www.billshorten.fahcsia.gov.au/internet/billshorten.nsf/content/right _to_ordinary_life_01apr09.htm I particularly like his comments more towards the end of the speech which touch more on the concepts of natural supports. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 11:08 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Gina, At no point do I believe that Youngcare has sinister motives - I firmly believe they think they are doing the right thing and for good reasons. Taking your point, I certainly don't think its cut and dry and agree with having options of choice for each individual and their circumstances, if that actually came to be. It's just that history has shown us that people with disabilities are inherently devalued in the eyes of our western society and therefore congregating and segregating people with disabilities has an adverse affect over time. I also take your point that often people using the Youngcare model may have full cognition, but it may only be a matter of time when that model is adopted by governments and other services and suddenly that setting is what's left on offer. This model is quick and easy, some families can stop planning and the slippery slope has begun. I'm also referring to the cohort of young people who could be parents themselves, not necessarily just student age people, who have left their family homes (husbands and kids) to live in a place where they receive the support they require, instead of the support coming to them in their own homes and communities. That's the bit I struggle with. Youngcare began with this very situation. Having said all of that, I am really mindful of the complexities of all of this. I am only putting out respectfully a point of view and hope it doesn't offend anyone. I just hope that choices made by any family or person are fully informed and considered from a number of angles. Many families aren't given those angles to consider which is of deep concern to me. Take care Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 10:36 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg This issue is where I get really confused. I loved living on University Campus, where I lived with heaps of other young people 'just like me' and others 'quite a bit different to me'. The fact is. young people like living with young people and at Canberra Uni some remained living on campus for their entire extended university experience.some for 9 years. Very few young adults, given the choice, would remain living with their parents. As I understand it, the majority of the young people currently living in nursing homes are physically affected but with full cognition. So if you could live in a 100% accessible environment where you had hydrotherapy pools (accessible), cinema rooms, gyms, a Wii room, fabbo computer access - a vibrant, exciting, diverse place with choices and options then surely this is the lesser of the two evils to living in an aged care facility. What is another current alternative? A group home with none of the cool facilities of a Young Persons 'nursing home' (due to economies of scale), which may or may not be accessible, where transport provisions are ad hoc where you may or may not choose who you live with, more isolation? For me the fight is for choice? But I would like to see a change to the current YoungCare model where it also provides accommodation for young people without a disability where part of their board may be subsidized by them undertaking support or caregiver roles for a certain number of hours per week, or they may pay a full rent/board to live their with a mate who may have a disability or because that is where they want to live because it might be a great place to live. And another addendum. residents of a Young Care facility should still be able to work if they are able and then that is simply their place of residence. Oh, and my last one. to establish a plan whereby residents could be encouraged through building friendships to move to more independent living environments and be supported to do so if that was their 'choice' to pursue that. Another thing we need to remember is that 'wheelchairs are not a sign of segregation'. For example if you have a group of people in wheelchairs hanging out with one another by choice, that is not segregation, that is choice. You will still have diversity within the group but there is a basic physical element to the fact if you are in a wheelchair you are automatically denied access to a large proportion of your physical environment simply because of access issues. You often have a synergy brought about by personal experiences and challenges, you may have similar interests you might not. Wheelchairs should be thought of as no different to shoes. I have met a young lady who lives nearby who sadly, as the result of a massive asthma attack, sustained a significant brain injury at 25years of age and who, despite having had an independent life and about to be married, is now back in the care of her parents. This is not normal or natural. She is completely immobile, tube fed, no speech and does get sick reasonably regularly. They live lives that make me very sad. They are isolated, her parents have pretty much, through their own stress and grief, turned all her friends (and theirs) away so that now no one comes to visit. Her care workers that come to their house are pretty revolting. They will not interact with her, nor respect her basic right to a pleasant enjoyable day - they don't even like her having the TV on because it annoys them. There has been no effort to establish a communication system for her. The number of people under one roof does not determine whether or not a place is an 'undesirable living situation' or institution as we refer to in the 'bad old days'. the type of care does. This girl deserves a better life. Her sisters fight as best they can for her to have a better life, but there are no real options. A YoungCare model of care would open up her world. Her friends could visit again, her mother can return to being her mother not her nurse, carer, project manager, accountant and staff supervisor (none of which she does particularly well, but she can do 'being a mum' well). Institutions of old are a bad idea, but I am not as scared of really clever, accessible and fun living arrangements for anyone. Even aged care facilities need a total overhaul if we are going to accept that congregated living arrangement is OK - many do not fit my model where vibrancy, fun, respect and choice are paramount. Not all families can cope or manage with providing care for a profoundly disabled person. It is never appropriate for a 20 year old to live in an aged care facility - so at times we need to help create middle ground options and my personal opinion is that is what YoungCare are trying to do. I don't believe their intent is sinister but it certainly will need people to be vigilant to ensure it doesn't' turn into something it ought not. I am sure many of my views do not sit well with a lot of people, but be mindful I come very much from the viewpoint of physical disabilities. In the current state of affairs I am faced with a very real possibility of Mac still being at home and, among other things, me still changing nappies on him when he is 40 years old . I can't even imagine the indignance he will no doubt feel as a result of that - so you can see why there has to be more options for him in all this and why we fight for them. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:53 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi , I also worry about institutionalisation coming back in by stealth. We have the situation of Youngcare where millions of corporate dollars and heaps of community events are donating their proceeds to this nursing home for young people. Somehow there was outrage at young people in aged care facilities but its OK to be segregated and congregated with people your own age?? I believe you're right Jo, they have never really gone away...and it doesn't take much for them to gain ground again either if there isn't any rigorous advocacy done around it. Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 7:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. 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URL: From familyvoices at inpress.pledgonline.com Sun May 3 07:29:40 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 22:29:40 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <003e01c9cbf3$644a1d40$2cde57c0$@net.au> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> <001201c9cbe8$d3361d40$79a257c0$@net.au> <003e01c9cbf3$644a1d40$2cde57c0$@net.au> Message-ID: <000301c9cbfb$9898a460$c9c9ed20$@net.au> Absolutely help me bite! You know I believe in better funding, period. But I think also our belief that money solves everything is mistaken. Money doesn't buy you love. It can buy some really awful situations and suffering.... Call me idealistic, but I think the best investment we have made in Eli's life are his relationships. I find it highly ironic that at age 18, with very high support needs and the need for 24 hour care, there is not just one, there are three homes inhabited by young friends who are not only happy to share with him but also happy to provide all the care he needs for free! AND the system says that ain't good enough and they won't support it!!! We aren't very good at building strong and sustainable networks of support around people yet - and I acknowledge that some folks in Australia are pretty good at it, but in the minority. Now we have sussed this relationship thing, there are so many people we can just call for support. Life is easy and good, for us and for Eli. This is where we need to start educating systems - the problem we had was that the expenses we said Eli actually needed covered to be able to move out of home don't match their definition of the expenses he should have...and I did get them to admit that this is because they have not had an example of a person with very high support needs living with NO paid support. I am really interested in the power of expectation...we aim so low for our kids sometimes, and that can be because of this belief that funding from the system provides the only answer. How can our kids have well paid jobs? Profitable businesses? Long term sustainable and supportive relationships? Until we believe it can be done, it won't happen. In order to stop people from talking about a return to institutions, we need to show them some solid real life examples of other ways of doing.... Jaquie (who should be marking papers not writing to you crazy people!) From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 9:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jaquie, I am so sorry to hear your application was turned down and will catch up with you soon to find out what the next steps will be. In relation to parents feeling the need for long term, nailed down security - do you mean buildings, funding or both? I guess the stakes are so high (vulnerability) that, for me I want to put into place as much as I possibly can for Daniel - friends, family, financial security, housing and so on. After being in Canada and seeing and hearing of the support families receive without having to fight tooth and nail for, which is commensurate with their family members needs I believe more than ever that we need to demand the same. It would then mean we would be free to focus on supporting where a person will work, who they will live with (Brenda lived on her own with 24/7 paid support) and so on. Our starting point is fear at not getting helped - how many 70/80 year olds have we met over time who are still caring for their son or daughter without ANY support because they are not in enough crisis or are on a waiting list for an Agency to help out the maximum of 3hrs per week! I do want security in knowing that Daniel will be able to choose to live where he would like without the risk of being institutionalised. I do want friends in his life where they will be involved but not expected to take on a support workers role. Daniel will and does experience anxieties and difficulties at varying degrees in his life and will continue to do so but for me to relax about where he might live beyond my capacities of caring for him will not be possible until I know he'll have the funding to fit his need. With the nursing homes/institutions snapping at our heels I feel this is essential along with a supportive microboard who will aim to provide for all of his other needs - I don't have a view that I should be able to say where Dan's home address will be in 10 years time is necessary, however I do want the funds commensurate with his needs to enable him to have the free will of where he chooses to live - WA - North/South, SA.... wherever. I agree we need systems to change - I think what Maureen said about that elephant might help - one bite at a time! Can I help you bite? Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:15 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg All the stuff I have seen says that institutions are pretty expensive to run. I think its more to do with this issue of feeling the need for long term, nailed down security for a person with a disability. I used to feel that too, very strongly, until I realised recently that I no longer have that fear (thanks to microboards...). A good life just isn't compatible with most of our systems - we need them to change in response to the results of inclusion if we are to progress. We just had our application for community living funding turned down because it was too open ended.....if we really live this deeply then we won't be saying for sure where Eli will be living, and with who, in 10 years time. The system couldn't deal with that degree of uncertainty even though otherwise Eli's plan was watertight and even though its aim was inclusive living. If we don't want institutions, then what do we want? The majority of families I work with want maximum, 100%, nailed down security AND 100% good inclusive free life - actually the two things are incompatible. With inclusion and freedom come risks, an unknown future...possibilities, anxieties....how do we deal with all of these things? Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 5:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. 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URL: From familyvoices at inpress.pledgonline.com Sun May 3 07:33:27 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 22:33:27 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <003e01c9cbf3$644a1d40$2cde57c0$@net.au> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> <001201c9cbe8$d3361d40$79a257c0$@net.au> <003e01c9cbf3$644a1d40$2cde57c0$@net.au> Message-ID: <000801c9cbfc$1f884070$5e98c150$@net.au> A bit more on this one .....I guess I mean buildings and funding. Eli's plan was turned down because we refused to commit to the notion of him HAVING to own a home in order to satisfy their funding criteria. Why should he have to own a home? That isn't a typical experience. He might want to one day, but who knows what the future will bring? If we are mad enough to live with that degree of uncertainty, then they should be. We just want him to have the chance to have a go at a typical life...sharing with friends, moving around a bit, trying things out, living on someone's lounge room floor surrounded by pizza boxes and beer cans.... Ok, back to work for me... Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 9:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jaquie, I am so sorry to hear your application was turned down and will catch up with you soon to find out what the next steps will be. In relation to parents feeling the need for long term, nailed down security - do you mean buildings, funding or both? I guess the stakes are so high (vulnerability) that, for me I want to put into place as much as I possibly can for Daniel - friends, family, financial security, housing and so on. After being in Canada and seeing and hearing of the support families receive without having to fight tooth and nail for, which is commensurate with their family members needs I believe more than ever that we need to demand the same. It would then mean we would be free to focus on supporting where a person will work, who they will live with (Brenda lived on her own with 24/7 paid support) and so on. Our starting point is fear at not getting helped - how many 70/80 year olds have we met over time who are still caring for their son or daughter without ANY support because they are not in enough crisis or are on a waiting list for an Agency to help out the maximum of 3hrs per week! I do want security in knowing that Daniel will be able to choose to live where he would like without the risk of being institutionalised. I do want friends in his life where they will be involved but not expected to take on a support workers role. Daniel will and does experience anxieties and difficulties at varying degrees in his life and will continue to do so but for me to relax about where he might live beyond my capacities of caring for him will not be possible until I know he'll have the funding to fit his need. With the nursing homes/institutions snapping at our heels I feel this is essential along with a supportive microboard who will aim to provide for all of his other needs - I don't have a view that I should be able to say where Dan's home address will be in 10 years time is necessary, however I do want the funds commensurate with his needs to enable him to have the free will of where he chooses to live - WA - North/South, SA.... wherever. I agree we need systems to change - I think what Maureen said about that elephant might help - one bite at a time! Can I help you bite? Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:15 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg All the stuff I have seen says that institutions are pretty expensive to run. I think its more to do with this issue of feeling the need for long term, nailed down security for a person with a disability. I used to feel that too, very strongly, until I realised recently that I no longer have that fear (thanks to microboards...). A good life just isn't compatible with most of our systems - we need them to change in response to the results of inclusion if we are to progress. We just had our application for community living funding turned down because it was too open ended.....if we really live this deeply then we won't be saying for sure where Eli will be living, and with who, in 10 years time. The system couldn't deal with that degree of uncertainty even though otherwise Eli's plan was watertight and even though its aim was inclusive living. If we don't want institutions, then what do we want? The majority of families I work with want maximum, 100%, nailed down security AND 100% good inclusive free life - actually the two things are incompatible. With inclusion and freedom come risks, an unknown future...possibilities, anxieties....how do we deal with all of these things? Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 5:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 3 07:43:48 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 3 May 2009 22:43:48 +0800 Subject: FV: carer issues In-Reply-To: References: Message-ID: <0FC62E45CF434B528F81B708573A8AB3@Main> I have been reading the online conversation about carers with interest. I too heard the radio national interview. Life Matters is one of my favourite programmes and in my experience they usually do pretty good job of bringing issues on disability to Australia . I think the interviewer, I hope, was playing devil's advocate with the institution question, but it was scary to hear it said out loud. I guess because we live in such a small and cut off town we have been forced to be very creative with the available funding towards stuff like carers and respite. It also helps that many of us sit on different committees finding one or more people from the other committees there too!! This gives us a detailed picture of people's needs.To give you an example, the local Silver Chain manager came to meet our PLEDG group to ask about holes in the respite system.This lady used to work in mental health and so has a good understanding about the needs and risks for both the carers and the "cared for". She knows my sister who runs the local volunteer recourse centre . With our combined contacts we have managed to get one of our members weekly respite by spending respite money to find an extra helper for the scout group fro two boys to go to once a week and for them both to go on camps.....this could not have been done before as the scout leader could not cope on his own, a simple yet effective plan...and cost effective, not to mention the tremendous natural setting this provides for the boys to be socialbe . Another area of concern was that we do not have enough carers to help out with respite......to normalise lets call them 'baby-sitters' for the younger kids and 'mates that sleep over' for the older ones. Many of us do, however, have family in Perth who could help out when a rest is needed...but it is expensive to come down. But guess what. It is actually cheaper to fly Grandma down from Perth to stay with the kids than to pay for a weeks worth of 24hr care....even if we could find a carer....we put this idea forward some years ago when the only respite offered meant that our kids would have to go to the local hospital, even if they had no actual "medical" needs! Now finally, with this new manager behind it, we have got approval for the plan. You know that when the service providers....or facilitators as I would prefer to call them, live in the community they work for and with, they are much more likely to be accommodating and helpful. I am a firm believer in "community"and building local capacity....with a little imagination large cities could also work on a local level.. The caring issue is only one of the pieces in the puzzle however. What happens to our kids once they are grown is the over-arching driver to most of what we do. It is not enough for my child to be cared for, as with any parent we want our children to reach their potential. Often, because our kids have extra challenges this takes more effort from us, and lets face it , from them ,than it would for other families, but IT IS WORTH IT. Yes independant living is risky, but with all the available technology the possibility of communication when in trouble is infinately better than when I left home and went to live in London....big scary place !!!! I was invoved in a demo, my parents knew I was going on it and saw dreadful riots and injuries and arrests on the news....I had left had left halfway and gone to babysit...did not see a tv so had no idea that things were so nasty..my parents worried for two days before they go hold of me.....this would never happen today .......we need to bend all the new and amazing technology to our needs. Should shut up now..............so much to say though!!!!!!!! (I can hear you laughing Darrell) Caroline McCallum PLEDG Esperance ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 03, 2009 9:38 PM Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Anita Absolutely agree with you. At the heart of it is invest in the person with the disability and the rest follows. There is so much that needs to be changed it makes my head hurt. often. Bill Shorten is starting the grasp many of the concepts. here's the link to his speech at the National Press Club for those who haven't already had access to it. He spoke not long after we got back from Canada so many of us were likely quite busy. http://www.billshorten.fahcsia.gov.au/internet/billshorten.nsf/content/right_to_ordinary_life_01apr09.htm I particularly like his comments more towards the end of the speech which touch more on the concepts of natural supports. Gina ------------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 11:08 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Gina, At no point do I believe that Youngcare has sinister motives - I firmly believe they think they are doing the right thing and for good reasons. Taking your point, I certainly don't think its cut and dry and agree with having options of choice for each individual and their circumstances, if that actually came to be. It's just that history has shown us that people with disabilities are inherently devalued in the eyes of our western society and therefore congregating and segregating people with disabilities has an adverse affect over time. I also take your point that often people using the Youngcare model may have full cognition, but it may only be a matter of time when that model is adopted by governments and other services and suddenly that setting is what's left on offer. This model is quick and easy, some families can stop planning and the slippery slope has begun. I'm also referring to the cohort of young people who could be parents themselves, not necessarily just student age people, who have left their family homes (husbands and kids) to live in a place where they receive the support they require, instead of the support coming to them in their own homes and communities. That's the bit I struggle with. Youngcare began with this very situation. Having said all of that, I am really mindful of the complexities of all of this. I am only putting out respectfully a point of view and hope it doesn't offend anyone. I just hope that choices made by any family or person are fully informed and considered from a number of angles. Many families aren't given those angles to consider which is of deep concern to me. Take care Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 10:36 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg This issue is where I get really confused. I loved living on University Campus, where I lived with heaps of other young people 'just like me' and others 'quite a bit different to me'. The fact is. young people like living with young people and at Canberra Uni some remained living on campus for their entire extended university experience.some for 9 years. Very few young adults, given the choice, would remain living with their parents. As I understand it, the majority of the young people currently living in nursing homes are physically affected but with full cognition. So if you could live in a 100% accessible environment where you had hydrotherapy pools (accessible), cinema rooms, gyms, a Wii room, fabbo computer access - a vibrant, exciting, diverse place with choices and options then surely this is the lesser of the two evils to living in an aged care facility. What is another current alternative? A group home with none of the cool facilities of a Young Persons 'nursing home' (due to economies of scale), which may or may not be accessible, where transport provisions are ad hoc where you may or may not choose who you live with, more isolation? For me the fight is for choice? But I would like to see a change to the current YoungCare model where it also provides accommodation for young people without a disability where part of their board may be subsidized by them undertaking support or caregiver roles for a certain number of hours per week, or they may pay a full rent/board to live their with a mate who may have a disability or because that is where they want to live because it might be a great place to live. And another addendum. residents of a Young Care facility should still be able to work if they are able and then that is simply their place of residence. Oh, and my last one. to establish a plan whereby residents could be encouraged through building friendships to move to more independent living environments and be supported to do so if that was their 'choice' to pursue that. Another thing we need to remember is that 'wheelchairs are not a sign of segregation'. For example if you have a group of people in wheelchairs hanging out with one another by choice, that is not segregation, that is choice. You will still have diversity within the group but there is a basic physical element to the fact if you are in a wheelchair you are automatically denied access to a large proportion of your physical environment simply because of access issues. You often have a synergy brought about by personal experiences and challenges, you may have similar interests you might not. Wheelchairs should be thought of as no different to shoes. I have met a young lady who lives nearby who sadly, as the result of a massive asthma attack, sustained a significant brain injury at 25years of age and who, despite having had an independent life and about to be married, is now back in the care of her parents. This is not normal or natural. She is completely immobile, tube fed, no speech and does get sick reasonably regularly. They live lives that make me very sad. They are isolated, her parents have pretty much, through their own stress and grief, turned all her friends (and theirs) away so that now no one comes to visit. Her care workers that come to their house are pretty revolting. They will not interact with her, nor respect her basic right to a pleasant enjoyable day - they don't even like her having the TV on because it annoys them. There has been no effort to establish a communication system for her. The number of people under one roof does not determine whether or not a place is an 'undesirable living situation' or institution as we refer to in the 'bad old days'. the type of care does. This girl deserves a better life. Her sisters fight as best they can for her to have a better life, but there are no real options. A YoungCare model of care would open up her world. Her friends could visit again, her mother can return to being her mother not her nurse, carer, project manager, accountant and staff supervisor (none of which she does particularly well, but she can do 'being a mum' well). Institutions of old are a bad idea, but I am not as scared of really clever, accessible and fun living arrangements for anyone. Even aged care facilities need a total overhaul if we are going to accept that congregated living arrangement is OK - many do not fit my model where vibrancy, fun, respect and choice are paramount. Not all families can cope or manage with providing care for a profoundly disabled person. It is never appropriate for a 20 year old to live in an aged care facility - so at times we need to help create middle ground options and my personal opinion is that is what YoungCare are trying to do. I don't believe their intent is sinister but it certainly will need people to be vigilant to ensure it doesn't' turn into something it ought not. I am sure many of my views do not sit well with a lot of people, but be mindful I come very much from the viewpoint of physical disabilities. In the current state of affairs I am faced with a very real possibility of Mac still being at home and, among other things, me still changing nappies on him when he is 40 years old . I can't even imagine the indignance he will no doubt feel as a result of that - so you can see why there has to be more options for him in all this and why we fight for them. Cheers Gina ------------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:53 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi , I also worry about institutionalisation coming back in by stealth. We have the situation of Youngcare where millions of corporate dollars and heaps of community events are donating their proceeds to this nursing home for young people. Somehow there was outrage at young people in aged care facilities but its OK to be segregated and congregated with people your own age?? I believe you're right Jo, they have never really gone away...and it doesn't take much for them to gain ground again either if there isn't any rigorous advocacy done around it. Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 7:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. 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URL: From familyvoices at inpress.pledgonline.com Sun May 3 15:44:05 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 06:44:05 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <003701c9cbe7$29046e90$7b0d4bb0$@com> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> <001a01c9cbdd$5a37b120$0ea71360$@com> <003701c9cbe7$29046e90$7b0d4bb0$@com> Message-ID: <001101c9cc40$aa479140$fed6b3c0$@net.au> I just wanted to say I love how you phrased that Darrell....'prisons of our collective minds over time'....thats so well said. Its true about love too...it was actually Eli's friends who got him out of respite care in the end (the respite care he was going to being a mini-institution in itself). They would advocate for him with us every week...actually they did that for years...telling us how much he hated going there. A couple of them actually went in a few times and came out pale faced and horrified....'no wonder he doesn't like going in there...'. Well, they won in the end, and now they provide us with the support we need when we want to go out.... Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:03 PM To: familyvoices at inpress.pledgonline.com Cc: 'Sharon Bourke' Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Sorry to say, we have not moved "forward" far at all, and yet a million miles. Institutions are not buildings or systems holding our children and the children of our ancestors, but prisons of our collective minds across time. We have failed collectively to love and love enough on a large enough canvass to banish the institution from the world's thinking but we have learned enough and loved enough to banish it from our lives. Let us keep that love alive, always. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 6:53 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi , I also worry about institutionalisation coming back in by stealth. We have the situation of Youngcare where millions of corporate dollars and heaps of community events are donating their proceeds to this nursing home for young people. Somehow there was outrage at young people in aged care facilities but its OK to be segregated and congregated with people your own age?? I believe you're right Jo, they have never really gone away...and it doesn't take much for them to gain ground again either if there isn't any rigorous advocacy done around it. Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 7:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. 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URL: From familyvoices at inpress.pledgonline.com Sun May 3 16:03:04 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 07:03:04 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <003601c9cbea$dbb5cb80$93216280$@net.au> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> <003601c9cbea$dbb5cb80$93216280$@net.au> Message-ID: <001901c9cc43$50d10300$f2730900$@net.au> One last one - I've really gained a lot from reading this thread - the example you give below Jo about the agency is also to do with control - families and the person must be in control of everything - the money, who is employed and how...etc. I think it is this combined with education that we need. Three years ago, we were still in the 'we need money, we need paid support, we're scared we are going to be looking after Eli for the next 40 years' way of thinking. With good quality education and mentoring from other parents (from the US) I think we have moved on from that dramatically. I still think funding is really important, and will fight tooth and nail for families to get an entitlement for better funding, but I now don't feel dependent on it or like we even actually need it. Not getting the community living funding didn't really phase me (other than my rage at how dare they refuse my boy!) in the sense that we're just thinking about other ways to do it now... Eli is staying at one of those friend's places for a couple of nights this week to see how it goes in terms of a longer term move in and I feel confident that we can work something out. It feels to me like the more control we give Eli and the more faith we have in his ability to direct his own life, the more stuff just happens for him anyway. I think that sounds like a really crap thing to say and I wouldn't say it anywhere else (other than to the microboards families) - especially where families are struggling, that must sound very 'she'll be alright just change your attitude'... Its keeping in mind that we have been working on changing our thinking for 3 years now and there have been many many small steps in that time, each one feeling like the biggest hurdle. It really seems to me that: as our expectations for Eli's life have changed, his life has changed. I don't expect to have to look after him now, or into the future any more...and I don't, other than when I really want to. I just log onto facebook now usually and ask whoever is online if they want to stay over Wed night while Darryl and I go out, or go to the movies with Eli on Saturday afternoon while I go to work... I guess what I'm trying to say is we need to stop focussing on money, buildings, staff and go back to our core beliefs about what is possible and would should happen and start there. Our first focus should be on people. As well as families asking for more money, first, we should ask for better communities. Demand that schools include our kids, that our kids are welcomed everywhere, that people support us. Invite others to share the good stuff of our kids, to have them in their homes, to contribute. Lets have more co-parenting (two or more families) where any child has additional needs, rather than respite centres. And so on. There are some other answers, some other choices. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jane, I think it is a combination of things, economics is one aspect, one of the others is what people know. I didn't include Daniel in Mainstream Schooling because I believed in it - that came about by accident. I thought sending Dan to a school in another town 30 minutes away to a segregated setting was the best place for him to go - after 12 months of attending Forums, Seminars, speaking to principals of private, independent and public schools, speaking to principals of Special Education Units, Centres and Schools, talking with the specialists at the Child Development Centre (the last one said Dan would not be well enough to attend ANY school) and parents of children with disabilities I came up with the conclusion that Dan would be safer, have the right stimulation (hyrdro therapy, sensory room), nurse, well trained staff etc.....we've heard the same story dozens of times, if he attended a special school in another town. I thought I had done my homework and it was only by sheer luck that Dan ended up going to our local school 500 metres from our home - thank goodness. I guess my point is that I had purposely gone out to talk to a variety of people from different education settings including parents and truly believed I was making the right choice. If my past experiences of people with a disability were that they "went" somewhere else to people who have the "expertise" and I had no exposure to someone with a disability at my school, in my street, in my community etc, what other conclusions could I come up with. I'm in awe when I meet mums and dads whose starting point is quite different to mine and it fascinates me that it is something other parents just know - I wonder what I missed in those early days. It wasn't until attending Canada that my belief in Inclusion was cemented. I had vacillated over the years given the overwhelming degree of negativity and opposition within the school at the administrative level and many times with the teacher/s, wondering if it was me that had the problem. I thank the parents of Daniel's peers who constantly came up to Gordon and myself thanking us for putting Daniel in their child's class because they knew their children would not grow up frightened of people with disabilities as they themselves were and that their children would learn how to interact appropriately (that was a BIG learning curve for me - this inclusion stuff was reciprocal) but it was all stuff that I had to learn. A long story here to get to a point I know, but I guess my point is that here I was directly affected by having a baby with a disability and I would do no harm to my precious baby - yet I almost did - most people in our community have no real connection with people with disabilities and are at the point of where I was when we first started our journey, so I don't think it's just about a lack of "Will". Governments NEED to be MADE to understand why it is good for everyone to be included in community life - I just haven't worked out how. Economics wise, well I guess I can only draw from my experience of talking to people who have worked in nursing homes and who now work for me privately where they have told me that in the nursing homes they get 15 minutes to shower a person, here they have an hour because that's how long it takes. A friend of mine handed her funding over to agencies (DSC told her they would fund the agency commensurate with the appropriate hourly rate if she did this) only to find that now she has no choice over who comes into their home and if the support worker phones in sick the agency has no obligation to send out a replacement and the onus is on the parents to find the support (she works and this has made things very tricky as you can imagine). So with my limited understanding of how things are run in agencies I think a lot of it does come down to economics. Someone else may have more experience in this area and share their thoughts. I agree with you, the fight for the most basic of needs is shameful, there is no excuse where governments are not providing them. Oh, and the bit where I said (interesting, considering it was a government agency who convinced me that inclusion was the way to go), I should have said it is a government agency that has been providing information from overseas speakers for the past 17 years on inclusion which has been one of the things assisting me to believe in inclusion - it's how I got to meet Bruce. And yes, it is wonderful to have these conversations here - thanks Jane Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 5:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. 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URL: From familyvoices at inpress.pledgonline.com Sun May 3 20:30:39 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 13:30:39 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <000301c9cbfb$9898a460$c9c9ed20$@net.au> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> <001401c9cbd2$0fef9520$2fcebf60$@net.au> <20B1AC8494B4490EBE95659FA428AA5D@dell91> <001201c9cbe8$d3361d40$79a257c0$@net.au><003e01c9cbf3$644a1d40$2cde57c0$@net.au> <000301c9cbfb$9898a460$c9c9ed20$@net.au> Message-ID: <61D5C2FE517A475D9E3309AFFBCF77D2@dell91> Haven't read the rest but had to reply oh crazy person!! YES YES YES I am so with you. I agree with all you say and my heart and gut tell me that you are right. BUT I too am scared about how to do it. I know one thing that I have done which is having a circle around Sarah and I. It has been pretty powerful. Bloody scary at times, another journey but right. It has been the best thing and is the only support I have and have had which is not paid for?? It has also created support that isn't paid for. We are all now elephant eaters!!!!as well as crazy people. Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, May 04, 2009 12:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Absolutely help me bite! You know I believe in better funding, period. But I think also our belief that money solves everything is mistaken. Money doesn't buy you love. It can buy some really awful situations and suffering.... Call me idealistic, but I think the best investment we have made in Eli's life are his relationships. I find it highly ironic that at age 18, with very high support needs and the need for 24 hour care, there is not just one, there are three homes inhabited by young friends who are not only happy to share with him but also happy to provide all the care he needs for free! AND the system says that ain't good enough and they won't support it!!! We aren't very good at building strong and sustainable networks of support around people yet - and I acknowledge that some folks in Australia are pretty good at it, but in the minority. Now we have sussed this relationship thing, there are so many people we can just call for support. Life is easy and good, for us and for Eli. This is where we need to start educating systems - the problem we had was that the expenses we said Eli actually needed covered to be able to move out of home don't match their definition of the expenses he should have...and I did get them to admit that this is because they have not had an example of a person with very high support needs living with NO paid support. I am really interested in the power of expectation...we aim so low for our kids sometimes, and that can be because of this belief that funding from the system provides the only answer. How can our kids have well paid jobs? Profitable businesses? Long term sustainable and supportive relationships? Until we believe it can be done, it won't happen. In order to stop people from talking about a return to institutions, we need to show them some solid real life examples of other ways of doing.... Jaquie (who should be marking papers not writing to you crazy people!) From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 9:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jaquie, I am so sorry to hear your application was turned down and will catch up with you soon to find out what the next steps will be. In relation to parents feeling the need for long term, nailed down security - do you mean buildings, funding or both? I guess the stakes are so high (vulnerability) that, for me I want to put into place as much as I possibly can for Daniel - friends, family, financial security, housing and so on. After being in Canada and seeing and hearing of the support families receive without having to fight tooth and nail for, which is commensurate with their family members needs I believe more than ever that we need to demand the same. It would then mean we would be free to focus on supporting where a person will work, who they will live with (Brenda lived on her own with 24/7 paid support) and so on. Our starting point is fear at not getting helped - how many 70/80 year olds have we met over time who are still caring for their son or daughter without ANY support because they are not in enough crisis or are on a waiting list for an Agency to help out the maximum of 3hrs per week! I do want security in knowing that Daniel will be able to choose to live where he would like without the risk of being institutionalised. I do want friends in his life where they will be involved but not expected to take on a support workers role. Daniel will and does experience anxieties and difficulties at varying degrees in his life and will continue to do so but for me to relax about where he might live beyond my capacities of caring for him will not be possible until I know he'll have the funding to fit his need. With the nursing homes/institutions snapping at our heels I feel this is essential along with a supportive microboard who will aim to provide for all of his other needs - I don't have a view that I should be able to say where Dan's home address will be in 10 years time is necessary, however I do want the funds commensurate with his needs to enable him to have the free will of where he chooses to live - WA - North/South, SA.... wherever. I agree we need systems to change - I think what Maureen said about that elephant might help - one bite at a time! Can I help you bite? Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 8:15 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg All the stuff I have seen says that institutions are pretty expensive to run. I think its more to do with this issue of feeling the need for long term, nailed down security for a person with a disability. I used to feel that too, very strongly, until I realised recently that I no longer have that fear (thanks to microboards...). A good life just isn't compatible with most of our systems - we need them to change in response to the results of inclusion if we are to progress. We just had our application for community living funding turned down because it was too open ended.....if we really live this deeply then we won't be saying for sure where Eli will be living, and with who, in 10 years time. The system couldn't deal with that degree of uncertainty even though otherwise Eli's plan was watertight and even though its aim was inclusive living. If we don't want institutions, then what do we want? The majority of families I work with want maximum, 100%, nailed down security AND 100% good inclusive free life - actually the two things are incompatible. With inclusion and freedom come risks, an unknown future...possibilities, anxieties....how do we deal with all of these things? Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 5:55 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi Jo This is short too but a thought I have had "is it economics? Is it really more economical to put people into institutions? I just worry that it isn't about the money like education it's about peoples "WILL" to do something. I don't mean families as I understand and see the families you talk about and worry about that too. Its like the fact here you can only get personal care into your home 3 days a week. Why? Fortunately I live in a small town so the intuition more than probably won't be built but in saying that families get swayed to the lovely nursing home. I see that with ageing mothers and their daughters because the person with a disability has been living a life with mum for years so has no friends of her own. I'm sure it's about a better life, a real life given the opportunities. "The fight for basic survival" the govt should be ashamed. It's the stuff we have to talk about with support to each other. cheers Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 03, 2009 7:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Or is it that families are just plain exhausted to fight for anything more than their basic survival needs even if it means going back to institutions - it begs the question, do Governments have us where they want us? I meet so many parents who don't have any more fight left in them and it scares me that because of the exhaustion levels, those institutions might just start appearing again. I'm not sure what the stats are now but only two years ago there were approx. 60 people with profound disabilities living in nursing homes in their 30's in Western Australia - I guess that means institutions have never completely disappeared, just not the ones set up on the hill or outside of town!! Yes, I feel very scared that people in power are talking that way again and with the baby boomers getting very tired with large numbers needing care not only for their family member but also for themselves it's all feeling very shaky. It's easy to forget recent history when economics dictate so much. It's all very depressing but great to be aware of the sinister side of the political agenda (interesting, considering it was a government agency who convinced me that inclusion was the way to go). Anyhow, I guess it means we need to be more vigilant in our efforts for our children and hopefully collectively in some strategic way. That'll do from me, Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 3 May 2009 2:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg HI Meg I think you are so right in what you say, please don't crash! There is something very scary about the Carers reports and what is being said. Also the lack of knowledge, understanding and awareness of the past. The history is not that old but either forgotten or not spoken loudly enough. How's the move going? Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 02, 2009 7:39 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement - Meg Hi Anita & everyone, Anytime Mondays or Fridays are best for me in relation to a future teleconference that may happen. I have notes ready to post once I know where to post them. NSW participants in the exchange are having a teleconference with other interested people from the state on Tuesday evening this week. I'm interested in discussing the reciprocal visit so put forward the idea of a thread in relation to this or specific place to post comments to further discussion/opportunities in relation to making this a reality. I know some comments have already been posted however I feel a more structured process may be required. As an aside I caught an announcer on radio national today interviewing people in relation to the Federal carer's report that was about to be released. Lots of people were calling in with horror stories about the difficulties faced when looking after their loved one. He said "doesn't this mean that it is time we went back to institutionalisation" I nearly crashed the car. To me it is like saying rich white people are feeling the financial pinch so we should return to slavery or South Africa is having some political troubles so we had better return to apatite or there aren't enough workers in manual jobs so return to child labor. These comments would never, ever be made. It just shows how far we have to go in relation to the generic populations attitudes to our family members and the level of ignorance held in relation to the life outcomes of an institutional existence. PS everyone, you have probably realised that spelling and grammar are not my strong points so I hope you will ignore any blunders as I will be completely unaware. Cheers, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 27 April 2009 11:30 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi everyone, It seems that it may be premature to hold the teleconference this week; many of those who travelled can't participate for various reasons. It would be really difficult to run this with only one or two participating that have travelled. So, I'll postpone the teleconference until after the forum for notes etc is in place for those of you who are "listening" and are keen to be involved and get information on what we experienced. This will also hopefully be useful for those who travelled to consolidate the experiences. Our IT guru here at Mamre will put together a forum hopefully within the week. I'll attempt to put in links for specific subjects and we can put the link to the forum on the Family Voices website. I'll let you know when that is up and running and will start putting notes, articles and other bits that were gathered on there. Anyone can then add to that information so hopefully everything will be captured. I just want to say that the discussions are fantastic, and best of luck with the Early Intervention paper. If it gets accepted, I'd like to support some families from Queensland to attend so please keep us posted! Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hello everyone, I have been silent so far, only just recovering from the adventure and setting back to work and home life. I cannot participate in the teleconference on Wednesday 29th as I will be at work however look forward to any further outcomes. I'll be posting some belated comments in relation to previous discussions so .talk soon ! Meg Sweeney ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 11:09 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement HI Catherine How would the VALID conference in Geelong early in the new year sound? for some people it might be excellent. Deb held the One Person At a Time conference in November last year. She would be the person to speak to regarding future planning. >From a personal experience, I feel the One Person At A Time conference would be ideal as it is ALL about Inclusion and very geared to parents. Just thoughts................. Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, April 17, 2009 8:41 AM Subject: Re: FV: Reciprocal visit and inclusion movement Hi there, I think this email went astray, as I may have clicked the wrong button, so apologies if some of you have received it previously. In reply to the question you posed Darrell, a conference is certainly one way of 'spreading the message' which I think is important, plus it gives us an opportunity to utilise the wealth of knowledge and experience that will come with the Canadians. I can see Robin, Wendy and Bruce talking about the Rotary Employment Partnership, Sheena and her mum telling Sheena's story, Laura or a parent, describing the Navigator initiative and possibly another parent presenting the Inclusive post secondary experience, just to name a few. We would also include Australian parents as presenters, as we too have wonderful examples to share. A conference isn't absolutely necessary, but it is one way of bringing a lot of stuff together and sharing it with many more people than we will otherwise reach. Perhaps we could tag the trip onto a conference that will be happening anyway. When is the next One person at a time conference happening in Victoria? How about a CRU conference in Qld? Any others that people may be aware of? There will be an advocacy conference coordinated by the Disability Advocacy Network Australia (DANA) in March 2010. It will be the third national advocacy conference to be held and at this stage it looks like it will be held in Sydney. I am on the Board of DANA and can explore this idea. As so much of the Canadian exchange initiative is linked to advocacy, I can see a synergy happening. We could run an Inclusion and parent leadership stream across the two days. Having parents at the event would be a new experience for the sector, but I see that as a good thing. Anyway, just some thoughts to add to the pot. Catherine Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 10:16 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement Hi all, It has been such a pleasure to sit back and read all of the collective wisdom that is flowing through these discussions. At first I thought we would put up the site to get the discussion rolling on Canada but what flowed was so beautiful that I just sat back and said - wow - let that one flow! As to a Family Voices page, there is one up and the threads can (and are already) archived according to thread (topic) as well as author, date so each discussion can be followed or accessed separately. Ruben is currently working on Wiki - whatever that is - for you. Happy though, if someone else want to take it over. I only started it to get the conversation rolling, and boy did it ever! Just a few early thoughts as to reciprocal visit, inclusion, leadership & stuff: 1. If a. What we experienced was part of Bruce's leadership program, b. Then bringing some of Canada's family leaders here (2 by 2's in the Arc model as we did to Canada) - have them hosted in each State by visitor to Canada and friends and have them visit what our son' s and daughters experience and THEN meet collectively (maybe State by State or Nationally) to discuss each of these in terms of a few central issues (as we did following the visits to each of Alberta's service structures). 2. Then we have returned the favour AND built another layer of leadership development and exchange at each local level. (Think global, act local.) 3. I see the listening to our critique without defense as one of the biggest things we got from the Canadians and I believe it was our "gift" to them as well. Their sharing the same here would repay these gifts in our mutual learning from one another. 4. Of course, we need to build in "play time" for the Canadians and other agendas are possible, such as Conference to end the event. Is that what you were suggesting Catherine? As I see it, inclusion is our journey as well as our destination, family leadership and alliances drive the train and our collective energies are its fuel. If this discussion is any gauge, there is much fuel in the tank. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 14 April 2009 2:17 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Reciprocal visit and inclusion movement Hi everyone, What fabulous discussion there has been! I'm really awed by the wisdom of this group and am excited about what's possible. I wonder if its time to talk now especially about "what now" ie the inclusion movement in Australia, and the reciprocal visit. I'm setting up a conference call with Telstra for 1pm Wednesday 29 April for anyone who wants to participate. Let's use the email to plan for that teleconference and start with some of the ideas of: 1. Do we plan for the reciprocal visit first and do the movement/leadership development stuff later and separately? 2. If we do the visit, what do we want to achieve from it? 3. What does it look like, and how can the Canadians help us do it? 4. Who can do what, when and where There will be heaps more stuff, but this is just to kick start the conversation. If we can get all of this resolved by email and the discussions take us further along the path, we can decide whether we need to go ahead with the teleconference at the time. On another note, I think its really important that we get somewhere set up where we can put our notes from the Canada workshops, visits, conference etc in a way that everyone can access and add to them. The others who didn't go can then can get onto the same page and know what we are talking about before contributing to the discussions. This needs to happen really soon. It would make sense to put that place on the Family Voices page that Darrell and Rueben set up. Otherwise, Mamre can host a site, or we can do something independently in a wiki form. Gina and I have been having that discussion so if everyone's happy, we'll continue to work on that bit together. Will keep you posted once we hear from Darrell. Anita :-) Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4005 (20090413) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4006 (20090414) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49e82268256931336712104! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.15/2093 - Release Date: 05/02/09 14:23:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.16/2094 - Release Date: 05/03/09 16:51:00 From familyvoices at inpress.pledgonline.com Sun May 3 22:10:34 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 15:10:34 +1000 Subject: FV: Bill Shorten SPEECH - NATIONAL PRESS CLUB ADDRESS Message-ID: <63F017FC9B34084F8D216E83F9E0184D07560CD9@amsterdam.ucstaff.win.canberra.edu.au> Bill Shorten's Speech at the National Press Club attached. An interesting read. Sheree Henley Senior Business Analyst What is a business analyst? Enterprise Portfolio Management Office Information and Communication Technology Services University of Canberra ACT 2601 Australia Phone: +61 (0)2 62012981 Fax: +61 (0)2 62015501 Email: Sheree.Henley at canberra.edu.au Website: www.canberra.edu.au Location: Building 10, Level A, Room 20 Australian Government Higher Education Registered Provider number (CRICOS): #00212K ************************NOTICE & DISCLAIMER********************************** This email and any files transmitted with it may contain confidential or copyright material and are for the attention of the addressee only. If you have received this email in error please notify us by email reply and delete it from your system. The University of Canberra accepts no liability for any damagecaused by any virus transmitted by this email. ________________________________ From: sea-group-act at googlegroups.com [mailto:sea-group-act at googlegroups.com] On Behalf Of Estelle Sydney-Smith Sent: Monday, 4 May 2009 2:09 PM To: sea-group-act at googlegroups.com Subject: [S.E.A. Group ACT] FW: Bill Shorten SPEECH - NATIONAL PRESS CLUB ADDRESS Hi everyone, This from Cheryl Pattrick. Thanks, Cheryl! : ) ________________________________ From: Cheryl Pattrick [mailto:cherylpattrick at bigpond.com.au] Sent: Sunday, 3 May 2009 1:10 PM To: estelle at sydneysmith.com Subject: Fw: Bill Shorten SPEECH - NATIONAL PRESS CLUB ADDRESS Hi Estelle, Could you post this on the SEA group email thanks Cheryl (I will get my self on the site soon hopefully!) FYI Cheryl <> www.billshorten.com.au ----------------------------------------------------------------------- This email, and any attachments, may be confidential and also privileged. If you are not the intended recipient, please notify the sender and delete all copies of this transmission along with any attachments immediately. You should not copy or use it for any purpose, nor disclose its contents to any other person. ----------------------------------------------------------------------- -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: Shorten National Press Club 1 April final.pdf Type: application/pdf Size: 45923 bytes Desc: Shorten National Press Club 1 April final.pdf URL: From familyvoices at inpress.pledgonline.com Sun May 3 23:29:39 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 16:29:39 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg Message-ID: <172F386E13044A428262A61380719B82D3A778@jcmail> It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again. Anywho It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". - wanting to connect to other families interested in governing and running their own supports. - working on valued roles in general - teaching others. Speaking at conferences and lectures and assisting others to learn. and so on I think what I'm saying is that - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on. - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches. All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. Libby -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 00:48:57 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 17:48:57 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <172F386E13044A428262A61380719B82D3A778@jcmail> Message-ID: Thanks Libby I am happy to read anything anyone has to say. As I said in my post this is an area I get very confused about and am trying to understand more about it. Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues). And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say. I also know I don't have a really good grasp of the variety of living arrangement people choose. For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity. I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families. My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future. Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again. Anywho It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". - wanting to connect to other families interested in governing and running their own supports. - working on valued roles in general - teaching others. Speaking at conferences and lectures and assisting others to learn. and so on I think what I'm saying is that - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on. - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches. All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. Libby _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 01:19:26 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 18:19:26 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: References: <172F386E13044A428262A61380719B82D3A778@jcmail> Message-ID: Hi there, Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called 'innovative options' like 'villages', and 'cluster houses'. This is the difference between what you have identified Gina ie the luxury over 50's developments and what people with disability will get.... Response to contemporary standards claim (2) Characteristics of village style accommodation for people without disabilities * Used by a wide variety of people of all ages, gender, ethnicity and capacity * Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out) * They live there by choice * They can come and go as they choose * They have control over their lifestyle (what to wear, what to eat, when to go to bed etc) * They can make unquestioned risky decisions * They have control over their financial arrangements/budget * They can choose who they want to live with and be friends with * They can choose their recreational activities * They choose where, when and how they work * They can move out when they choose. (This slide is courtesy of Anne Elysee) Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 5:49 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Thanks Libby I am happy to read anything anyone has to say. As I said in my post this is an area I get very confused about and am trying to understand more about it. Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues). And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say. I also know I don't have a really good grasp of the variety of living arrangement people choose. For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity. I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families. My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future. Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say. Cheers Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again. Anywho It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". - wanting to connect to other families interested in governing and running their own supports. - working on valued roles in general - teaching others. Speaking at conferences and lectures and assisting others to learn. and so on I think what I'm saying is that - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on. - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches. All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. Libby ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 05:27:32 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 22:27:32 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: References: <172F386E13044A428262A61380719B82D3A778@jcmail> Message-ID: <0CEC4CF41F79440899783A822EE3FE11@SWEENEYDESKTOP> Wow, Talk about creating a talking storm..I had no idea this intense conversation would evolve from my off hand comments about the carer report. So much juicy conversation and ideas falling onto the pages. I'm adding some comments in relation to current conversations and other issues that I feel need to be discussed. Sorry I do headings, it is for my thought processes rather than yours otherwise I go all over the dam place. Choice Choice is only so if it is a real choice that ordinary people would value as a choice in ordinary circumstances. A choice between no support or a bed somewhere with support is not a choice that the typical population would find acceptable. If you were homeless perhaps, however that links the current view of choice for people with disability to another devalued group in our community rather than the ordinary, typical person. All people who face devaluation need a playing field elevated to that of typical, ordinary people rather than a lower common denominator. Real choice would allow numerous options that were flexible and fluid to allow for change of personal circumstance. Heaven forbid that any of our loved ones should choose to shack up with someone. Oh no, no, no it's not in the plan.... As I have commented previously segregated thinking sees people being assessed and then a placement, program or facility is identified to cater for the deficits/needs of the individual. Inclusive community thinking is the opposite. Starting first with the person with disability or family and building on where the natural fit lies for them. There will never be two outcomes the same as no two people are the same even if their disability has the same label. Some people like cities, some quite lives, some deeply connected to their religious community, some to the local newspaper shop. Any place, no matter how beautiful or modern or espousing of great things that groups people on the basis of the care that they need without that same level of care being available anywhere the person chooses is unacceptable. It is segregation and congregation on the basis of people's most fundamental needs and never a real choice but one made on the desperation of need. Gina, to follow your point, once the choice is available for an individual to attend uni and live on campus with adequate support as a young person as well as the centre based facility we may have made progress. Funding and freely given supports Funding comes and goes, you're in/you're out depending on all sorts of criteria as are Governments and social conscience. As in Canada until recently funding wasn't the issue. Due to record low unemployment they couldn't attract staff to work with anyone even if the money tree rained abundantly. This will happen in Australia as well as the global economy improves and our working population grow older. Freely given relationships, ordinary places and valued roles in the community for our loved ones are the fundamental things we can achieve without money. This is the mainstay of people's lives, any funding or money that comes forward makes things easier for sure, however pinning all our hopes on money is a false goal. A rented stranger from an agency can never compare with a neighbor you have known for 10 years, a classmate since kindy, your local bus driver, the church community you have always attended. I always am interested in why it is so hard for us to ask someone we know for support, invite them into our lives and yet we think that paying a stranger will be easier or more appropriate? Even roles within the family can be added to and enhanced once they are recognized as important and appropriate giving wonderful opportunities to people. Some of us had discussion while away about brothers and sisters. Helping someone to be a great uncle, aunt, brother, sister, grandchild, niece costs nothing and can really open doors for all sorts of relationships and opportunities to develop. As most things all of this starts with us believing that our people have great things to offer, are not just passive recipients of care. Jacquie's comments about expecting a different future, one that involves freely given relationships and then this unfolding are familiar to me. Jo, it's like Brenda's house, her mum wouldn't have noticed the 'for sale' sign if she hadn't already done the thinking about her daughter having a home of her own. As to freely given friendship, I would really appreciate some further conversation in relation to the provision of intimate personal care by friends if that is required, rather than paid workers, as this is something that I have had lots of discussions with people about however do not share that same life experience. Conflict of Interest This must be recoginised and discussed. Those that care and those that are cared for have fundamental conflicts of interest. It is something that I am very concerned about in relation to the carer enquiry and the rise of the carer voice that has much more current airplay than self advocacy. What is in my interests is often not in my daughters interests and vice versa. As Jo mentioned some families are worn out and may consider institutionalisation as a last resort or the only option however they wont have to live on a day to day basis with that decision, their son or daughter will. No matter how hard my life may get I know it isn't nearly as hard a Joscelyn's. I may have not asked for a child with a disability however she didn't ask for a disability either. I will always have greater options available to me in navigating disability than she will, such as a voice, a voice that is considered, friends that can keep me focused and strengthened, capacity to learn and connect with others to find help, wherewithal to muster support if I require it. The reality of her life is that she is totally reliant on Todd and I and in growing ways her brother and sister, friends and neighbors. She will always need this support no matter how good her life is due to her intellectual impairment. Supporting a life outcome for her, which would be unacceptable for me in my life, is just not on, no matter how hard things may get. I recognise my power in her life and honor the reality that my needs, need to be superseded often in this equation however all things in balance I still have options available to me that my daughter has not. Equally her needs will be probably be to move out and as Jacquie said sleep on the floor surrounded by pizza boxes and beer bottles!!!! This may not be the actual scenario however the essence is that my conflict will be to let her go as she gets older, let other people in and let her experience risk (prudent risk that is). Families are very good at managing conflict of interest..not everyone's needs can be met at once and most families do an exceptional job of negotiating this. It's when the inherent conflict of interest is not identified or understood that we run into trouble. I can ask for anything I like, I just need to be sure who I'm requesting it for. I might say I want an institution for my child but it would be for me and my interests/my needs not for my daughter's interests/needs. She would never choose an institution for herself. However as I have conceded to the position of upholding the interests of the most vulnerable person in our family, that is Joscelyn, my energy is spent finding community ways for her to have a good life thus enabling all our lives to be good too. Articles on conflict of interest are available at the Family Advocacy Inclusion Collection library if you're interested. Unlocking Community Capacity So much of our Canadian experience focused on unlocking untapped generic community capacity. Many of the programs auspiced by AACL didn't rely on one on one funding but a coordinator or support to identify, muster and then support natural community stuff with a reduction of support/withdrawal methodology once community supports were in place. If the community is involved in natural ways then the need for intensive support is markedly reduced and life outcomes are greatly improved. This however is a very skilled job and I'm sure the success in Alberta is due to the leadership and clear vision of AACL and their control over the programs and staff involved. This shows us two things: without the vision for a regular life for people it is unlikely to happen, once you have the vision then all sorts of possibilities open up. I particularly like looking to the community as an untapped resource instead of looking to government to provide more funding which could potentially just increase the segregated stuff on offer. Bill Shorten's speech I'm interested in his reference to the union movement in relation to commensurate numbers of people with disability and their families and how unorganized we are as a political force in comparison. I wonder if it is in some ways that we are apologetic. Thank you for your time, thank you for what you have given us, thank you, thank you, thank you !!!!! Unions are much more hard-line about what is right and wrong, what is on and what is not, what they will accept and what they wont. They also have the bargaining chip of strike action and its effect on the economy that we have not. As Bruce said on the trip he has never seen anyone without money, with power. Perhaps more direct funding will change this power imbalance???? Don't know. Cheers everyone, Meg Sweeney _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 6:19 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi there, Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called 'innovative options' like 'villages', and 'cluster houses'. This is the difference between what you have identified Gina ie the luxury over 50's developments and what people with disability will get.... Response to contemporary standards claim (2) Characteristics of village style accommodation for people without disabilities * Used by a wide variety of people of all ages, gender, ethnicity and capacity * Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out) * They live there by choice * They can come and go as they choose * They have control over their lifestyle (what to wear, what to eat, when to go to bed etc) * They can make unquestioned risky decisions * They have control over their financial arrangements/budget * They can choose who they want to live with and be friends with * They can choose their recreational activities * They choose where, when and how they work * They can move out when they choose. (This slide is courtesy of Anne Elysee) Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 5:49 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Thanks Libby I am happy to read anything anyone has to say. As I said in my post this is an area I get very confused about and am trying to understand more about it. Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues). And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say. I also know I don't have a really good grasp of the variety of living arrangement people choose. For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity. I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families. My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future. Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again. Anywho It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". - wanting to connect to other families interested in governing and running their own supports. - working on valued roles in general - teaching others. Speaking at conferences and lectures and assisting others to learn. and so on I think what I'm saying is that - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on. - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches. All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. Libby _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 06:36:41 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 23:36:41 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: Message-ID: Thanks Catherine & Meg Catherine, That is great information thank you. I do want all of that for every person (of course with the added benefit of it being fully accessible with built in discreet ceiling tracking, automatic wider doors & taps, Japanese style bidet toilets, fully accessible bathrooms with turning circles and lifts ? so that an otherwise unlikely candidate for independence has the best shot at independence). Mental note to self must change Australian Building Standards when time permits And I can see how Young Care is different to that model but still don?t know what to wish for when it comes to those too young to be in aged care facilities and who have nowhere else to go, or for those imprisoned in their homes because, through no fault of their own, true access to their community has been hard to achieve and I guess my na?ve belief in all this is that by Young Care providing a middle ground for these people they can then redevelop relationships, create friendships and then possibly choose to move on from that model. It is a very happy shiny place in my world ? I can often assume things will simply exist when they don?t. BUT you might be pleased to know we have just taken a very big step for us, and only agreed to because I have taken what you have all said very seriously. We have to attend a birthday party in Wagga this weekend and while we wanted to attend the party without Mac we still wanted him over in Wagga for the rest of the weekend. So, our friends in a nearby town (Mangoplah) are going to look after him on Saturday night. This is huge from our perspective ? we don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep but also because he just isn?t a disruptive child ? he is only hard work over night so he is easy to take out and about with us. I feel a bit of a fake as he has been a little unwell and we have had to revert to some medication for him for the first time in 5 years and the slightly pleasant side effect is that it does make him sleep a little better ? at least enough that I don?t feel like these friends will be expected to pull an ?all-nighter? having to sit up with him the entire night. So thank you all for giving me the courage to do this ? even if it is with performance enhancing drugs and the likely significant financial cost to us in red wine when we stay with them for the next night. I will remember to chant ?I have no guilt, this is normal & natural? whenever I feel myself slipping into that ?guilt trap?. Meg, thanks for your flippant throw away line about the ?carers report?. I haven?t even begun to read it ? still rumbling with school stuff. But thanks for the impetus for great conversation/comments. Cheers All Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 6:19 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi there, Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called ?innovative options? like ?villages?, and ?cluster houses?. This is the difference between what you have identified Gina ie the luxury over 50?s developments and what people with disability will get.... Response to contemporary standards claim (2) Characteristics of village style accommodation for people without disabilities * Used by a wide variety of people of all ages, gender, ethnicity and capacity * Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out) * They live there by choice * They can come and go as they choose * They have control over their lifestyle (what to wear, what to eat, when to go to bed etc) * They can make unquestioned risky decisions * They have control over their financial arrangements/budget * They can choose who they want to live with and be friends with * They can choose their recreational activities * They choose where, when and how they work * They can move out when they choose. (This slide is courtesy of Anne Elysee) Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 5:49 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Thanks Libby I am happy to read anything anyone has to say. As I said in my post this is an area I get very confused about and am trying to understand more about it. Points I raise aren?t necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don?t deny anyone their choices (provided as Anita says they are made after being fully aware of the issues). And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say. I also know I don?t have a really good grasp of the variety of living arrangement people choose. For example, there has been the recent increase in luxury housing developments for the over 50s ? I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity. I live on the family farm ? there are three families on our farm ? my sister?s family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families. My son, Mac is sixth generation on this property ? so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren?t smart about his options for the future. Please keep any conversations and insights around this issue going ? I love it all and appreciate all everyone has to say. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again. Anywho It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". - wanting to connect to other families interested in governing and running their own supports. - working on valued roles in general - teaching others. Speaking at conferences and lectures and assisting others to learn. and so on I think what I'm saying is that - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on. - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches. All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. Libby _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 06:42:46 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 4 May 2009 21:42:46 +0800 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <0CEC4CF41F79440899783A822EE3FE11@SWEENEYDESKTOP> References: <172F386E13044A428262A61380719B82D3A778@jcmail> <0CEC4CF41F79440899783A822EE3FE11@SWEENEYDESKTOP> Message-ID: <002601c9ccbe$354a63d0$9fdf2b70$@net.au> So much great stuff in that mammoth post, Meg, but I picked out one bit to comment on which I also think is really interesting/crucial As to freely given friendship, I would really appreciate some further conversation in relation to the provision of intimate personal care by friends if that is required, rather than paid workers, as this is something that I have had lots of discussions with people about however do not share that same life experience. I guess I can only share Eli's experience, which is that some of his friends have happily provided this, others unhappily provided it, and other refuse to provide it, and all three are ok. Imagine the most gruesome toilet scene ever....well, thats what we deal with sometimes. I think a poo party is probably the worst that can happen. For some of Eli's friends, attending to this is a matter of pride- they know its a big deal and they are proud that they can deal with it. Another of Eli's friends has asperger and an acute sense of smell - imagine the most acute sense of smell ever in a human being and you would be getting close. I caught him cleaning poo off almost all of the school bus seats one day. He was making Eli watch him - gagging and all - because he wanted Eli to see exactly how upset he was with him. Someone else could have done it but this kid was determined. Eli hasn't soiled the school bus since. His other mate Liam is here with me now. He is telling me he has cleaned up eli's vomit and thats as far as it goes for him - he just said 'I did good, didn't I?...I was sick for 5 days after'. Liam won't go near poo though because that would 'take the friendship beyond friendship'. Liam also has an acute sense of smell though...sense of smell seems to be the deciding factor. Eli seems to attract a lot of asperger type friends. I'd love to hear other thoughts. Liam has also just designed a wicked wheelchair and he'd like you all to know. But he won't share the idea unless you all steal it. Oh and Liam has now decided you can catch flesh eating viruses from cleaning up vomit so he might not be doing it again soon... Jaquie J -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 14:21:29 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 5 May 2009 07:21:29 +1000 Subject: FV: What is inclusion? In-Reply-To: <002601c9ccbe$354a63d0$9fdf2b70$@net.au> Message-ID: Hi All After a school meeting that I guess went moderately well, I now have the task of providing the school some tangible information and thoughts around what inclusion truly is. They have acknowledged they don't have a clue what to do when it comes to Mac. I would possibly argue they don't have a clue with any of the children with additional support needs, but for now they are quite proud of their 'pull out' style of segregated inclusive education. We have quite a way to go. So I have another meeting in a fortnight where we are meant to be helping them start to determine what is essentially a policy to help guide them. Just as they have a tangible and documented approach to the establishment of their shared vision and core values the feeling was this should be a more formal approach initially until the concept of inclusion becomes an innate part of what they do. ie that inclusive education simply becomes education. And also to ensure everyone has the same definition of what inclusion actually is. We tried not to use the term inclusion very much per Meg's suggestion, but it just kept slipping in there from both parties. So if anyone has some brilliant, all encompassing 'blurbs' that would be great. They have established a place on their website for me (and them) to start providing reading opportunities, links etc so they can use that in their professional development - I have lots of stuff for there, but trying to find the best one or two paragraph overview is what I want to have perfect. You know the kind of thing you read and just go, oh, I get it. Thanks in advance Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 15:54:23 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 5 May 2009 08:54:23 +1000 Subject: FV: What is inclusion? In-Reply-To: References: <002601c9ccbe$354a63d0$9fdf2b70$@net.au> Message-ID: Hi Gina, As one port of call it might be worthwhile looking at the in:press website and look under articles. Link: http://inpress.pledgonline.com/navigation/1home/index.htm Good luck and maybe we can catch up if time permits in Wagga. Todd _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 7:21 AM To: familyvoices at inpress.pledgonline.com Subject: FV: What is inclusion? Hi All After a school meeting that I guess went moderately well, I now have the task of providing the school some tangible information and thoughts around what inclusion truly is. They have acknowledged they don't have a clue what to do when it comes to Mac. I would possibly argue they don't have a clue with any of the children with additional support needs, but for now they are quite proud of their 'pull out' style of segregated inclusive education. We have quite a way to go. So I have another meeting in a fortnight where we are meant to be helping them start to determine what is essentially a policy to help guide them. Just as they have a tangible and documented approach to the establishment of their shared vision and core values the feeling was this should be a more formal approach initially until the concept of inclusion becomes an innate part of what they do. ie that inclusive education simply becomes education. And also to ensure everyone has the same definition of what inclusion actually is. We tried not to use the term inclusion very much per Meg's suggestion, but it just kept slipping in there from both parties. So if anyone has some brilliant, all encompassing 'blurbs' that would be great. They have established a place on their website for me (and them) to start providing reading opportunities, links etc so they can use that in their professional development - I have lots of stuff for there, but trying to find the best one or two paragraph overview is what I want to have perfect. You know the kind of thing you read and just go, oh, I get it. Thanks in advance Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 16:09:45 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 5 May 2009 07:09:45 +0800 Subject: FV: What is inclusion? In-Reply-To: References: <002601c9ccbe$354a63d0$9fdf2b70$@net.au> Message-ID: <000b01c9cd0d$6a6f2e70$3f4d8b50$@net.au> Well done Gina! Looks like you have done am awesome job of enrolling the school - congratulations! I think that's a really cool idea about coming up with a definition and having everyone on the same page - your school sounds awesome to be so up for this. This is wonderful. I don't have any blurbs, but just want to say...there are two aspects to this which I think are at least equally important. In retrospect, personally I think the social inclusion side is actually more important than the academic inclusion side of things. Its not good if kids aren't academically well included. Its a tragedy if they aren't socially well included because the long term consequences to mental health and well being of social isolation are so significant. In your definition make sure that the social inclusion aspect is highlighted. I'm not sure what Mac's situation is, if he has an aid or not? If h has an aid their role is very important (as you know from Canada) - they need to be staying as far away from him as possible so as to not impede the development of relationship with his peers. I guess the other part would be that academically Mac should do what the other kids do. Do you have a copy of the program/curriculum his class is following? If you wanted to forward it to us we could make some suggestions as a group. And just again...well done. It isn't easy or normal for schools to be so up for this kind of conversation. You have done some great work. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 5:21 AM To: familyvoices at inpress.pledgonline.com Subject: FV: What is inclusion? Hi All After a school meeting that I guess went moderately well, I now have the task of providing the school some tangible information and thoughts around what inclusion truly is. They have acknowledged they don't have a clue what to do when it comes to Mac. I would possibly argue they don't have a clue with any of the children with additional support needs, but for now they are quite proud of their 'pull out' style of segregated inclusive education. We have quite a way to go. So I have another meeting in a fortnight where we are meant to be helping them start to determine what is essentially a policy to help guide them. Just as they have a tangible and documented approach to the establishment of their shared vision and core values the feeling was this should be a more formal approach initially until the concept of inclusion becomes an innate part of what they do. ie that inclusive education simply becomes education. And also to ensure everyone has the same definition of what inclusion actually is. We tried not to use the term inclusion very much per Meg's suggestion, but it just kept slipping in there from both parties. So if anyone has some brilliant, all encompassing 'blurbs' that would be great. They have established a place on their website for me (and them) to start providing reading opportunities, links etc so they can use that in their professional development - I have lots of stuff for there, but trying to find the best one or two paragraph overview is what I want to have perfect. You know the kind of thing you read and just go, oh, I get it. Thanks in advance Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 17:08:02 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 5 May 2009 08:08:02 +0800 Subject: FV: What is inclusion? In-Reply-To: <000b01c9cd0d$6a6f2e70$3f4d8b50$@net.au> References: <002601c9ccbe$354a63d0$9fdf2b70$@net.au> <000b01c9cd0d$6a6f2e70$3f4d8b50$@net.au> Message-ID: <2CC93A1738814B96A4D3560A00B33D1D@Main> Hi Everyone, a very sticky issue this.... but I tend to use the three headings I learned about in Darrell's workshops. Physical Inclusion (being there), Social Inclusion(being there with friends)and hardest to grasp for many Curricular Inclusion(being there and learning with friends). Without all three elements the school is not inclusive. Pull out groups are not inclusive because they are seperate.....it's like being pregnant you can't be it a little bit, you either are or you are not. Pull out groups do work, but inclusion works better ,even when it is done badly...this is what ALL the research shows. Good luck! Caroline PLEDG Esperance ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, May 05, 2009 7:09 AM Subject: Re: FV: What is inclusion? Well done Gina! Looks like you have done am awesome job of enrolling the school - congratulations! I think that's a really cool idea about coming up with a definition and having everyone on the same page - your school sounds awesome to be so up for this. This is wonderful. I don't have any blurbs, but just want to say...there are two aspects to this which I think are at least equally important. In retrospect, personally I think the social inclusion side is actually more important than the academic inclusion side of things. Its not good if kids aren't academically well included. Its a tragedy if they aren't socially well included because the long term consequences to mental health and well being of social isolation are so significant. In your definition make sure that the social inclusion aspect is highlighted. I'm not sure what Mac's situation is, if he has an aid or not? If h has an aid their role is very important (as you know from Canada) - they need to be staying as far away from him as possible so as to not impede the development of relationship with his peers. I guess the other part would be that academically Mac should do what the other kids do. Do you have a copy of the program/curriculum his class is following? If you wanted to forward it to us we could make some suggestions as a group. And just again...well done. It isn't easy or normal for schools to be so up for this kind of conversation. You have done some great work. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 5:21 AM To: familyvoices at inpress.pledgonline.com Subject: FV: What is inclusion? Hi All After a school meeting that I guess went moderately well, I now have the task of providing the school some tangible information and thoughts around what inclusion truly is. They have acknowledged they don't have a clue what to do when it comes to Mac. I would possibly argue they don't have a clue with any of the children with additional support needs, but for now they are quite proud of their 'pull out' style of segregated inclusive education. We have quite a way to go. So I have another meeting in a fortnight where we are meant to be helping them start to determine what is essentially a policy to help guide them. Just as they have a tangible and documented approach to the establishment of their shared vision and core values the feeling was this should be a more formal approach initially until the concept of inclusion becomes an innate part of what they do. ie that inclusive education simply becomes education. And also to ensure everyone has the same definition of what inclusion actually is. We tried not to use the term inclusion very much per Meg's suggestion, but it just kept slipping in there from both parties. So if anyone has some brilliant, all encompassing 'blurbs' that would be great. They have established a place on their website for me (and them) to start providing reading opportunities, links etc so they can use that in their professional development - I have lots of stuff for there, but trying to find the best one or two paragraph overview is what I want to have perfect. You know the kind of thing you read and just go, oh, I get it. Thanks in advance Gina ------------------------------------------------------------------------------ I am using the Free version of SPAMfighter. We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 21:26:14 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 5 May 2009 14:26:14 +1000 Subject: FV: What is inclusion? In-Reply-To: <2CC93A1738814B96A4D3560A00B33D1D@Main> Message-ID: Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 21:30:44 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 5 May 2009 14:30:44 +1000 Subject: FV: What is inclusion? In-Reply-To: References: <2CC93A1738814B96A4D3560A00B33D1D@Main> Message-ID: <004601c9cd3a$423cae00$c6b60a00$@com.au> Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Mon May 4 22:04:46 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 5 May 2009 15:04:46 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg References: Message-ID: <172F386E13044A428262A61380719B82D9F779@jcmail> Following Meg's lead I've gone with headings. I always appear to be behind with this conversation. So I'm going back to Gina's original post to add to Meg and Catherine's response if that makes sense Lesser of two evils/middle ground/vigilance I think it is dangerous to accept proposals on the basis of lesser of two evils. Neither are acceptable and that is a powerful political statement in itself and one that (true) advocacy agencies should be (and are) making. The nursing home debate sparked the question 'what else is there?'. This is similar to your question, Gina, 'what are the alternatives?'. Up came the YoungCare model. So in this sense it is only one idea of an alternative, not THE idea. This implies that there are many other alternatives. Meg deftly points to them. We need to believe, ourselves, that there are multiple alternatives. I think sometimes this means ethically, that we need to take a leap of faith. I knew I had to do this when my brother moved from a group home. I simply couldn't imagine how it would look, but decided that I needed to do it anyway. Middle ground sux is my next point (with the greatest respect!). Group homes were argued as middle ground, support units are, enclaves and sheltered workshops are. People never move from them. At least they don't move through the system's efforts. Only through advocacy has this usually happened. It's dangerous to build bricks and mortar - they have a habit of staying around and trapping generations to come. I think of the parents I work with who get calls from the support unit asking them to enrol their kids. On investigation it turns out their numbers are down and they are trawling for enrolments. So much for choice hey! Bricks and mortar always create perverse incentives. I think of the families who started services that I currently work for - scores of managers come and go and those original intentions get lost. This brings me to vigilance. It's hard to be vigilant around things you actually have no real control over. We can say that we need to be vigilant when creating 'middle ground' options but what power do we truly have in this situation? Better to be going for the vigilance around Meg's options - there we have true power emanating from our family member's lives and the community they are connected to. Current alternatives? What are the alternatives? Well they're not cluster housing, villages or nursing homes for young people. They're the things Meg talks about. And they are waiting there to be created. It's interesting that people in those nursing homes would probably have a similar profile to my brother. We need to be careful about saying some things are only possible for some people. My brother would have a similar profile to young people coming out of school who get individualised post-school packages and get to manage their funds. Why does one person get a nursing home, one get no self-directed 'day' package and one person get it? This is a systemic failure. The person in the nursing home gets all sorts of assumptions made about them and their capacity by a series of systemic failures and perversions that actually have nothing to do with them. There are some exciting examples around Australia of people who asked the question 'what is the alternative?', but started thinking about it from Meg's principles. They have created some very interesting 'alternatives'. Inviting others in/reverse integration I would also suggest caution against creating structures where people without disability are invited to come into an already formed segregated structure. There are lots of examples of this - especially in schools - and they rarely work. There are, however, some interesting examples of intentional communities that involve people with disabilities. My family has contemplated something like this around my brother over the years. Those he lives with would come together through a discovered mutuality that has nothing to do with disability AND CERTAINLY nothing to do with non-disabled people as carers. Again, I think this is limiting of people's roles and potential contributions to make. It suggests the only role a non-diosabled person can have is 'carer'. HOWEVER, through such mutuality, people may discover interest in assisting my brother in different ways. Some people may not. have a look at the history of deohaeko support network in Toronto, Canada, for example. Janet Klees was recently here in Australia. Or check out Catherine Schaefer's story as told with her mother, Nicola, from Winnipeg in Canada. My husband and I have contemplated living in a co-operative living arrangement with others. The latest version of this came through an organic food group we belong to. There's your mutual interest and this is the way we all do it - so why not follow the same process for our family members. People with disabilities coming together People come together for varieties of reasons. When looking at political reasons why people get together, for example, I have gotten together with other women, and environmental activists. I have gotten together with other families. I've attended rallies and meetings organised by people with disability. This is like an advocacy collective around different groups and different issues. Brilliant. It's the way things change in this world. However, tell me that I need to join in with the local carer group or the sibling support group and I'll be needing a behaviour management plan!!!!!! It's the looking at me, making assumptions about who I should be with or where I belong, and then dictating that, that is the big problem here!!!! Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 11:37 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Thanks Catherine & Meg Catherine, That is great information... thank you. I do want all of that for every person (of course with the added benefit of it being fully accessible with built in discreet ceiling tracking, automatic wider doors & taps, Japanese style bidet toilets, fully accessible bathrooms with turning circles and lifts - so that an otherwise unlikely candidate for independence has the best shot at independence). Mental note to self... must change Australian Building Standards when time permits... And I can see how Young Care is different to that model but still don't know what to wish for when it comes to those too young to be in aged care facilities and who have nowhere else to go, or for those imprisoned in their homes because, through no fault of their own, true access to their community has been hard to achieve and I guess my na?ve belief in all this is that by Young Care providing a middle ground for these people they can then redevelop relationships, create friendships and then possibly choose to move on from that model. It is a very happy shiny place in my world - I can often assume things will simply exist when they don't. BUT you might be pleased to know we have just taken a very big step for us, and only agreed to because I have taken what you have all said very seriously. We have to attend a birthday party in Wagga this weekend and while we wanted to attend the party without Mac we still wanted him over in Wagga for the rest of the weekend. So, our friends in a nearby town (Mangoplah) are going to look after him on Saturday night. This is huge from our perspective - we don't ask friends to babysit- mostly because Mac simply just doesn't sleep but also because he just isn't a disruptive child - he is only hard work over night so he is easy to take out and about with us. I feel a bit of a fake as he has been a little unwell and we have had to revert to some medication for him for the first time in 5 years and the slightly pleasant side effect is that it does make him sleep a little better - at least enough that I don't feel like these friends will be expected to pull an 'all-nighter' having to sit up with him the entire night. So thank you all for giving me the courage to do this - even if it is with performance enhancing drugs and the likely significant financial cost to us in red wine when we stay with them for the next night. I will remember to chant... "I have no guilt, this is normal & natural" whenever I feel myself slipping into that 'guilt trap'. Meg, thanks for your flippant throw away line about the 'carers report'. I haven't even begun to read it - still rumbling with school stuff. But thanks for the impetus for great conversation/comments. Cheers All Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 6:19 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Hi there, Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called 'innovative options' like 'villages', and 'cluster houses'. This is the difference between what you have identified Gina ie the luxury over 50's developments and what people with disability will get.... Response to contemporary standards claim (2) Characteristics of village style accommodation for people without disabilities * Used by a wide variety of people of all ages, gender, ethnicity and capacity * Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out) * They live there by choice * They can come and go as they choose * They have control over their lifestyle (what to wear, what to eat, when to go to bed etc) * They can make unquestioned risky decisions * They have control over their financial arrangements/budget * They can choose who they want to live with and be friends with * They can choose their recreational activities * They choose where, when and how they work * They can move out when they choose. (This slide is courtesy of Anne Elysee) Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 5:49 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg Thanks Libby I am happy to read anything anyone has to say. As I said in my post this is an area I get very confused about and am trying to understand more about it. Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues). And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say. I also know I don't have a really good grasp of the variety of living arrangement people choose. For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity. I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families. My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future. Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say. Cheers Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 4 May 2009 4:30 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Reciprocal visit and inclusion movement - Meg It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again. Anywho It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". - wanting to connect to other families interested in governing and running their own supports. - working on valued roles in general - teaching others. Speaking at conferences and lectures and assisting others to learn. and so on I think what I'm saying is that - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on. - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches. All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. Libby ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 4 22:43:13 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 5 May 2009 15:43:13 +1000 Subject: FV: Reciprocal visit and inclusion movement - Meg In-Reply-To: <172F386E13044A428262A61380719B82D9F779@jcmail> Message-ID: Thanks Libby I will look into those references you provided - thanks muchly And thanks for taking the time to respond so many of the topics too. I absolutely appreciate that. As always, thanks everyone for sharing your knowledge. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Tue May 5 15:06:16 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 6 May 2009 06:06:16 +0800 Subject: FV: What is inclusion? In-Reply-To: <004601c9cd3a$423cae00$c6b60a00$@com.au> References: <2CC93A1738814B96A4D3560A00B33D1D@Main> <004601c9cd3a$423cae00$c6b60a00$@com.au> Message-ID: <000801c9cdcd$b62975d0$227c6170$@net.au> Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Tue May 5 16:31:09 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 6 May 2009 09:31:09 +1000 Subject: FV: What is inclusion? In-Reply-To: <000801c9cdcd$b62975d0$227c6170$@net.au> References: <2CC93A1738814B96A4D3560A00B33D1D@Main> <004601c9cd3a$423cae00$c6b60a00$@com.au> <000801c9cdcd$b62975d0$227c6170$@net.au> Message-ID: <000901c9cdd9$93b3c800$bb1b5800$@com.au> Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: not available URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Tue May 12 19:12:35 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 13 May 2009 12:12:35 +1000 Subject: FV: How was the NSW teleconference Message-ID: <001f01c9d370$48f56750$dae035f0$@Speed@mamre.org.au> Hi Meg and other NSW-ers - how did your teleconference go? For everyone: - I'm still mucking around with the forum for the notes, articles, handouts from Canada etc but something should be up soon. Hope everyone is going well! Anita Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Tue May 12 20:08:48 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 13 May 2009 13:08:48 +1000 Subject: FV: How was the NSW teleconference References: <001f01c9d370$48f56750$dae035f0$@Speed@mamre.org.au> Message-ID: <172F386E13044A428262A61380719B82D9FB61@jcmail> Hi - as a NSWer that didn't go but may know future parents and also have something potentially to offer Canadian parents - I found it really interesting! esp stuff about AACL and its community development focus rather than disability service development. Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 13 May 2009 12:13 PM To: familyvoices at inpress.pledgonline.com Subject: FV: How was the NSW teleconference Hi Meg and other NSW-ers - how did your teleconference go? For everyone: - I'm still mucking around with the forum for the notes, articles, handouts from Canada etc but something should be up soon. Hope everyone is going well! Anita Anita Speed Coordinator, Parent Program The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: image001.jpg URL: From familyvoices at inpress.pledgonline.com Thu May 14 17:20:09 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 15 May 2009 10:20:09 +1000 Subject: FV: How was the NSW teleconference In-Reply-To: <172F386E13044A428262A61380719B82D9FB61@jcmail> Message-ID: <7rkm5b$afjs70@ipmail01.adl6.internode.on.net> Hi Anita Libby is right, our discussions were able to highlight a few areas of interest from the trip for those who didn't attend. Most importantly, for me, Catherine was able to articulate the community focus of AACL (and freedom from constraints imposed by govt funding conditions etc) as the very obvious difference to what we have in NSW at the moment - what that means for the future isn't yet clear. We hope to have a get together at a later date to share reports, information etc. I look forward to putting a face to many of the names later in the year. It was a good starting point. Gina Gina Wilson-Burns 110a FLANNERY LANE, TAPITALLEE NSW 2540 TELEPHONE : 0412 022014 or 02 44460037 EMAIL: sandgburns at bigpond.com _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 13 May 2009 1:09 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: How was the NSW teleconference Hi - as a NSWer that didn't go but may know future parents and also have something potentially to offer Canadian parents - I found it really interesting! esp stuff about AACL and its community development focus rather than disability service development. Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 13 May 2009 12:13 PM To: familyvoices at inpress.pledgonline.com Subject: FV: How was the NSW teleconference Hi Meg and other NSW-ers - how did your teleconference go? For everyone: - I'm still mucking around with the forum for the notes, articles, handouts from Canada etc but something should be up soon. Hope everyone is going well! Anita Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Thu May 14 19:10:28 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 15 May 2009 12:10:28 +1000 Subject: FV: What is inclusion? In-Reply-To: <000901c9cdd9$93b3c800$bb1b5800$@com.au> Message-ID: <7rkm5b$afmaac@ipmail01.adl6.internode.on.net> Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Thu May 14 19:19:00 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 15 May 2009 12:19:00 +1000 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$afmaac@ipmail01.adl6.internode.on.net> References: <000901c9cdd9$93b3c800$bb1b5800$@com.au> <7rkm5b$afmaac@ipmail01.adl6.internode.on.net> Message-ID: Short answer Gina...same as the other kids but don't get into 'percentages' of anything - dangerous territory! Yes, write that letter...well meaning people do terrible things and can do great harm in their ignorance. See you next Friday. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 12:10 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder... should I really have 'brick wall dents in my head this early"?... today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair"... I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed... I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: image001.gif URL: From familyvoices at inpress.pledgonline.com Thu May 14 19:32:01 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 15 May 2009 12:32:01 +1000 Subject: FV: What is inclusion? In-Reply-To: Message-ID: <7rkm5b$afmnsu@ipmail01.adl6.internode.on.net> Thanks Catherine It is as I thought then - percentage not relevant - meaningful learning opportunities simply the same as the other kids. Thanks Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu May 14 19:34:09 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 15 May 2009 12:34:09 +1000 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$afmnsu@ipmail01.adl6.internode.on.net> References: <7rkm5b$afmnsu@ipmail01.adl6.internode.on.net> Message-ID: You got it. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 12:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Catherine It is as I thought then - percentage not relevant - meaningful learning opportunities simply the same as the other kids. Thanks Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 15 03:28:43 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 15 May 2009 20:28:43 +1000 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$afmaac@ipmail01.adl6.internode.on.net> References: <000901c9cdd9$93b3c800$bb1b5800$@com.au> <7rkm5b$afmaac@ipmail01.adl6.internode.on.net> Message-ID: <35C601D98BEE47268303B34D943BE6AF@dell91> HI all Possible not good time to write but here tis. What firstly makes me so sad, angry, confused etc is that what you are asking Gina doesn't seem to get better or change? (I know that's general and negative) At the moment I am seeing young people with disabilities being totally excluded from school from prep up. IN my day I didn't even think about that, I just did it sent my daughter to school the fight was for her to learn and yes be safe but not for one minute did I think that she would be excluded. Blond blinkers maybe I don't know. Now we seem to have more rules, human rights, policies but still terrible things happen to children with disabilities in the education world. On that note not just children with diagnosed disabilites, children ! So all those wonderful people I met on the most wonderful experience of my life in the disability world apart from my girl what are your thoughts and when are we coming together again, for a injection of energy.??? Hey Darrell I found today emails from patch chat, without really knowing we have been on the journey together for sometime. Regards Jane Ps girls with communication stuff have bought the ipod touch is great so far. Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, May 15, 2009 12:10 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.31/2116 - Release Date: 05/15/09 06:16:00 From familyvoices at inpress.pledgonline.com Fri May 15 04:23:07 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 15 May 2009 21:23:07 +1000 Subject: FV: What is inclusion? In-Reply-To: <35C601D98BEE47268303B34D943BE6AF@dell91> Message-ID: <7rkm5b$ag2ee3@ipmail01.adl6.internode.on.net> Hi Jane You are right to be sad that things the wonderful people before us have changed still, for many, sadly aren't permanent, they are temporary. I feel most disappointed for those who have already fought these fights for their kids and ours and yet here we are again, reiterating the same old stuff time and time again. These problems aren't always out of sheer ignorance, there are educators who have actively chosen not to understand, not to embrace, not to educate all and not to excel in their profession. It is too easy for them to cry 'poor' that they don't know what to do, how to do it, not enough resources and so on. Most of them are excuses. That being said there are some fantastic educators out there and we met some of them. We just need to clone them - just one per school should do it. I could stay in a world that I perceive is happy and shiny and everyone is well intentioned, but as you may have worked out it isn't my way, or our way (Shawn and I that is). And as Catherine pointed out well meaning people can still do great harm. Language is very important to us. With a journalist husband currently doing his Masters Research into the representation of disabilities in the media, we probably care more than many about choice of language. However, I don't lose total heart, I still get a great giggle from our Canadian counterparts who have the line "breaking new ground" quoted at them time and time again... for decades. I remember that every time someone tries to tell me we are 'breaking new ground' and respond with "rubbish, there are kids my age who have gone through mainstream education, this is nothing new". Chris Sarra wrote a great article in the Australian about indigenous education if you read it with a disability bent it rings just as true. He challenges his profession to do better and for them to challenge their peers who don't rise to the requirement. http://www.theaustralian.news.com.au/story/0,25197,25381548-7583,00.html It seems most people understand racism, but not disabilism. Maybe if I suggest to the school to replace every thought or idea they have around Mac or disability with "Aboriginal child" it might help them understand if their thought processes are sound or not eg Would they ask... "what % of the day should we include the Aboriginal child in meaningful learning." They would never say or think that.... hmmmmm. We'll get there eventually. Gina -- I am using the free version of SPAMfighter. We are a community of 6 million users fighting spam. SPAMfighter has removed 1584 of my spam emails to date. Get the free SPAMfighter here: http://www.spamfighter.com/len The Professional version does not have this message From familyvoices at inpress.pledgonline.com Fri May 15 08:23:27 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 16 May 2009 00:53:27 +0930 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$ag2ee3@ipmail01.adl6.internode.on.net> References: <35C601D98BEE47268303B34D943BE6AF@dell91> <7rkm5b$ag2ee3@ipmail01.adl6.internode.on.net> Message-ID: What a question, in short inclusion is the stuff of nervous breakdowns. For us it seemed to be a battle every step of the way .I cannot speak from the experience of a parent with a son or daughter with severe and multiple disability and can only reflect on comments from those families from the outside but I can well and truly speak from the inside when it comes to intellectual disability . Rachel is now 31 and we have all her life needed to fight for her inclusion in almost everything. Not unlike many parents we could recognize in our daughter areas where she was very capable of learning and had also developed some teaching skills of our own which enabled her to do so. We learnt at a very early stage in her life that her peers played a large role in her learning and her development. The battle came when we fought to maintain her daily contact with them. As with many stories we were told very clearly that she had Down syndrome and as such she was required to go to the Special School. And that seemed to be the only reason. The fact that she could read and write before she went to school was not even considered. We were presented with all the reasons she could not be accepted in the regular school. She would require extra staff and that would detract from others learning and other parents would object, that she would develop a behavior problem, and the most amazing comment, if we accept her we would be open to challenge from all the other families who had a child with a disability. We fought to the highest level and she was accepted, some lessons in s special small class but most in the mainstream. Year in and year out we were challenged one way or the other about her remaining in the school and each time we needed to negotiate the solution. Teacher aide time was not enough and we were not permitted to pay for our own support person to be with her at sensitive times so from time to time I needed to take on the role myself. Playground duty, as she was runner, discipline, strange how if I was around there was never any bad behavior but somehow the teachers did not have the same authority, I would never take her home for misbehaving. If she was to be sent home for any reason I would go to the school and She and I would sit outside the office of the Principal until it was time to go home even if that was all day. Sadly we became labeled as many are as ?in denial? and were treated as unfortunate parents. School years have been by far the hardest journey in our lives, but we are so grateful we took that journey and stuck with it through thick and thin because she did learn, It was not easy for her and she had some hard times but she knows about the big wide world and she has achieved many of the things we were told, when she was a baby, never to expect her to ever do.I agree there were some wonderful teachers along the way, who were skilled not only in teaching Rachel but also in helping us find our way through the system, we do need to clone them . I sometimes think we all grow up learning to have high regard for doctors and teachers in our lives and challenging either of these is often the most difficult. Certainly when one has a child with special needs some of the earliest journeys we must take is to get this in perspective. We would not let our butcher or baker take our hard earned money for goods we do not want. Why then should we not be as empowered in the selection and purchase of the activities and lifestyle for our sons and daughters that we also pay good money for. Miriam > To: familyvoices at inpress.pledgonline.com > Date: Fri, 15 May 2009 21:23:07 +1000 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > You are right to be sad that things the wonderful people before us have > changed still, for many, sadly aren't permanent, they are temporary. I feel > most disappointed for those who have already fought these fights for their > kids and ours and yet here we are again, reiterating the same old stuff time > and time again. > > These problems aren't always out of sheer ignorance, there are educators who > have actively chosen not to understand, not to embrace, not to educate all > and not to excel in their profession. It is too easy for them to cry 'poor' > that they don't know what to do, how to do it, not enough resources and so > on. Most of them are excuses. That being said there are some fantastic > educators out there and we met some of them. We just need to clone them - > just one per school should do it. > > I could stay in a world that I perceive is happy and shiny and everyone is > well intentioned, but as you may have worked out it isn't my way, or our way > (Shawn and I that is). And as Catherine pointed out well meaning people can > still do great harm. Language is very important to us. With a journalist > husband currently doing his Masters Research into the representation of > disabilities in the media, we probably care more than many about choice of > language. > > However, I don't lose total heart, I still get a great giggle from our > Canadian counterparts who have the line "breaking new ground" quoted at them > time and time again... for decades. I remember that every time someone > tries to tell me we are 'breaking new ground' and respond with "rubbish, > there are kids my age who have gone through mainstream education, this is > nothing new". > > Chris Sarra wrote a great article in the Australian about indigenous > education if you read it with a disability bent it rings just as true. He > challenges his profession to do better and for them to challenge their peers > who don't rise to the requirement. > http://www.theaustralian.news.com.au/story/0,25197,25381548-7583,00.html > > It seems most people understand racism, but not disabilism. Maybe if I > suggest to the school to replace every thought or idea they have around Mac > or disability with "Aboriginal child" it might help them understand if their > thought processes are sound or not eg Would they ask... "what % of the day > should we include the Aboriginal child in meaningful learning." They would > never say or think that.... hmmmmm. > > We'll get there eventually. > > Gina > > -- > I am using the free version of SPAMfighter. > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1584 of my spam emails to date. > Get the free SPAMfighter here: http://www.spamfighter.com/len > > The Professional version does not have this message > > _________________________________________________________________ View photos of singles in your area Click Here http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fdating%2Eninemsn%2Ecom%2Eau%2Fsearch%2Fsearch%2Easpx%3Fexec%3Dgo%26tp%3Dq%26gc%3D2%26tr%3D1%26lage%3D18%26uage%3D55%26cl%3D14%26sl%3D0%26dist%3D50%26po%3D1%26do%3D2%26trackingid%3D1046138%26r2s%3D1&_t=773166090&_r=Hotmail_Endtext&_m=EXT -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 15 17:49:33 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 16 May 2009 10:49:33 +1000 Subject: FV: What is inclusion? In-Reply-To: Message-ID: <7rkm5b$agbc0u@ipmail01.adl6.internode.on.net> Miriam You are right on so many levels. And certainly right about the difficulty in challenging people in positions of authority eg Doctors and Teachers. We have been discussing this a lot lately - makes for great dinner table discussions - trying to fathom why these 'power plays' occur ie is it "fear, farce or control". As you can imagine we have had our fair share of Drs/Professionals playing the power game but I am forever grateful for the opportunity that set our path in stone six weeks post Mac acquiring his brain injury. A devastating but life changing experience where I had to stand toe to toe with surgeons and specialists and challenge their choices for Mac which were literally killing him - he was not expected to survive the next couple of hours. While it was a position I wouldn't wish on anyone, it was the best thing that happened. It was what gave us the confidence we needed to know we truly knew what was right and we could read Mac better than anyone, we didn't have to hand control over to others and we couldn't afford to stand back and passively let bad decisions be made for Mac by others. Doesn't mean those people in authority still don't try it on with their often threatening remarks, some take passive aggressive to a whole new level, we just know how to identify them and call them on it more readily these days. Still, I know we need these adverse situations, without them we can't identify the hidden undercurrents and cant effect change. gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 15 18:16:43 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 16 May 2009 11:16:43 +1000 Subject: FV: What is inclusion? References: <35C601D98BEE47268303B34D943BE6AF@dell91><7rkm5b$ag2ee3@ipmail01.adl6.internode.on.net> Message-ID: <897FF7CBD8A34DD2B6734A1444AB913A@D8XYGK1S> I love reading your words Miriam. The education system, while it threw up all the challenges, seem to have faded for us now as I find the big challenge around other parents, and parents with or without young ones with a disability, who presume I am intending for find Lauren a "place" in a CRU or "somewhere for her to go"in a sheltered work environment. I am forever explaining that Lauren works and volunteers in a the community. I find myself using all sorts of language that seems ridiculous in explaining what she does. I never get asked these questions about Lauren's siblings who work, live and play in the community. Why should I be asked this of her? Even in a small parent group that I belong to, where we share information and support each other through all sorts of crisis! I seem to be forever talking to other parents about looking outside the square. I find allot of parents of young ones with a disability, just presume their child will be housed, fed, cared for in a place with others with a disability. Getting other parents to think about real inclusion is most difficult. There is always this thing that they want "group homes". I don't know where this notion has come from, but it is HUGE, and if education is challenging, I find the attitude of allot of parents is bigger... Maureen From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Saturday, May 16, 2009 1:23 AM Subject: Re: FV: What is inclusion? What a question, in short inclusion is the stuff of nervous breakdowns. For us it seemed to be a battle every step of the way .I cannot speak from the experience of a parent with a son or daughter with severe and multiple disability and can only reflect on comments from those families from the outside but I can well and truly speak from the inside when it comes to intellectual disability . Rachel is now 31 and we have all her life needed to fight for her inclusion in almost everything. Not unlike many parents we could recognize in our daughter areas where she was very capable of learning and had also developed some teaching skills of our own which enabled her to do so. We learnt at a very early stage in her life that her peers played a large role in her learning and her development. The battle came when we fought to maintain her daily contact with them. As with many stories we were told very clearly that she had Down syndrome and as such she was required to go to the Special School. And that seemed to be the only reason. The fact that she could read and write before she went to school was not even considered. We were presented with all the reasons she could not be accepted in the regular school. She would require extra staff and that would detract from others learning and other parents would object, that she would develop a behavior problem, and the most amazing comment, if we accept her we would be open to challenge from all the other families who had a child with a disability. We fought to the highest level and she was accepted, some lessons in s special small class but most in the mainstream. Year in and year out we were challenged one way or the other about her remaining in the school and each time we needed to negotiate the solution. Teacher aide time was not enough and we were not permitted to pay for our own support person to be with her at sensitive times so from time to time I needed to take on the role myself. Playground duty, as she was runner, discipline, strange how if I was around there was never any bad behavior but somehow the teachers did not have the same authority, I would never take her home for misbehaving. If she was to be sent home for any reason I would go to the school and She and I would sit outside the office of the Principal until it was time to go home even if that was all day. Sadly we became labeled as many are as ?in denial? and were treated as unfortunate parents. School years have been by far the hardest journey in our lives, but we are so grateful we took that journey and stuck with it through thick and thin because she did learn, It was not easy for her and she had some hard times but she knows about the big wide world and she has achieved many of the things we were told, when she was a baby, never to expect her to ever do.I agree there were some wonderful teachers along the way, who were skilled not only in teaching Rachel but also in helping us find our way through the system, we do need to clone them . I sometimes think we all grow up learning to have high regard for doctors and teachers in our lives and challenging either of these is often the most difficult. Certainly when one has a child with special needs some of the earliest journeys we must take is to get this in perspective. We would not let our butcher or baker take our hard earned money for goods we do not want. Why then should we not be as empowered in the selection and purchase of the activities and lifestyle for our sons and daughters that we also pay good money for. Miriam > To: familyvoices at inpress.pledgonline.com > Date: Fri, 15 May 2009 21:23:07 +1000 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > You are right to be sad that things the wonderful people before us have > changed still, for many, sadly aren't permanent, they are temporary. I feel > most disappointed for those who have already fought these fights for their > kids and ours and yet here we are again, reiterating the same old stuff time > and time again. > > These problems aren't always out of sheer ignorance, there are educators who > have actively chosen not to understand, not to embrace, not to educate all > and not to excel in their profession. It is too easy for them to cry 'poor' > that they don't know what to do, how to do it, not enough resources and so > on. Most of them are excuses. That being said there are some fantastic > educators out there and we met some of them. We just need to clone them - > just one per school should do it. > > I could stay in a world that I perceive is happy and shiny and everyone is > well intentioned, but as you may have worked out it isn't my way, or our way > (Shawn and I that is). And as Catherine pointed out well meaning people can > still do great harm. Language is very important to us. With a journalist > husband currently doing his Masters Research into the representation of > disabilities in the media, we probably care more than many about choice of > language. > > However, I don't lose total heart, I still get a great giggle from our > Canadian counterparts who have the line "breaking new ground" quoted at them > time and time again... for decades. I remember that every time someone > tries to tell me we are 'breaking new ground' and respond with "rubbish, > there are kids my age who have gone through mainstream education, this is > nothing new". > > Chris Sarra wrote a great article in the Australian about indigenous > education if you read it with a disability bent it rings just as true. He > challenges his profession to do better and for them to challenge their peers > who don't rise to the requirement. > http://www.theaustralian.news.com.au/story/0,25197,25381548-7583,00.html > > It seems most people understand racism, but not disabilism. Maybe if I > suggest to the school to replace every thought or idea they have around Mac > or disability with "Aboriginal child" it might help them understand if their > thought processes are sound or not eg Would they ask... "what % of the day > should we include the Aboriginal child in meaningful learning." They would > never say or think that.... hmmmmm. > > We'll get there eventually. > > Gina > > -- > I am using the free version of SPAMfighter. > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1584 of my spam emails to date. > Get the free SPAMfighter here: http://www.spamfighter.com/len > > The Professional version does not have this message > > ------------------------------------------------------------------------------ Click Here View photos of singles in your area -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 15 20:38:28 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 16 May 2009 11:38:28 +0800 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$afmaac@ipmail01.adl6.internode.on.net> References: <000901c9cdd9$93b3c800$bb1b5800$@com.au> <7rkm5b$afmaac@ipmail01.adl6.internode.on.net> Message-ID: <004901c9d5d7$c6d3bd20$547b3760$@com> Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Fri May 15 22:46:32 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 16 May 2009 15:46:32 +1000 Subject: FV: What is inclusion? In-Reply-To: <004901c9d5d7$c6d3bd20$547b3760$@com> References: <000901c9cdd9$93b3c800$bb1b5800$@com.au> <7rkm5b$afmaac@ipmail01.adl6.internode.on.net> <004901c9d5d7$c6d3bd20$547b3760$@com> Message-ID: <000001c9d5e9$ab0641a0$0112c4e0$@com> I remember you telling me this, Darrell - waiting! Waiting for the teacher to be organised, waiting for instructions, lining up to get into class etc etc. Scary stuff. Mark and I went and met Joel's teacher to talk about his progress, and he couldn't tell us anything at all. Because Joel didn't do some assessment work while we were in Canada, the teacher couldn't even give us a general indication on how he was going in class for that whole term. There's 24 kids in Joel's class - smallish compared to many others. And Joel doesn't have a disability... so the education thing is flawed in so many other ways too - not just around not being able to do inclusion. I won't get started about Dale's experience, but it just goes to show. That doesn't let them off the hook by the way... but needless to say, in order for both our sons to have some semblance of an education that includes reasonable academic outcomes, they are both having tutoring. We are lucky that we can afford to do it (albeit just barely) as so many can't, and shouldn't have to! Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Fri May 15 23:23:26 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 16 May 2009 16:23:26 +1000 Subject: FV: What is inclusion? In-Reply-To: <004901c9d5d7$c6d3bd20$547b3760$@com> Message-ID: <7rkm5b$agedgd@ipmail01.adl6.internode.on.net> Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sat May 16 00:26:13 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 16 May 2009 15:26:13 +0800 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$agedgd@ipmail01.adl6.internode.on.net> References: <004901c9d5d7$c6d3bd20$547b3760$@com> <7rkm5b$agedgd@ipmail01.adl6.internode.on.net> Message-ID: <006a01c9d5f7$97de0c80$c79a2580$@com> Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac J Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sat May 16 01:43:57 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 16 May 2009 18:43:57 +1000 Subject: FV: What is inclusion? In-Reply-To: <004901c9d5d7$c6d3bd20$547b3760$@com> References: <000901c9cdd9$93b3c800$bb1b5800$@com.au> <7rkm5b$afmaac@ipmail01.adl6.internode.on.net> <004901c9d5d7$c6d3bd20$547b3760$@com> Message-ID: <018401c9d602$74128820$5c379860$@net.au> I guess ... waiting!! Sally -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.12.28/2113 - Release Date: 13/05/2009 6:04 PM From familyvoices at inpress.pledgonline.com Sat May 16 03:16:30 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 16 May 2009 20:16:30 +1000 Subject: FV: What is inclusion? In-Reply-To: <006a01c9d5f7$97de0c80$c79a2580$@com> Message-ID: <7rkm5b$aggkc2@ipmail01.adl6.internode.on.net> Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sat May 16 17:36:12 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 10:36:12 +1000 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$aggkc2@ipmail01.adl6.internode.on.net> References: <006a01c9d5f7$97de0c80$c79a2580$@com> <7rkm5b$aggkc2@ipmail01.adl6.internode.on.net> Message-ID: Hi Gina Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. Q/Which manual or directions do you think are the simplest for programming? Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Can I download a dvd to ipod direct or does everything have to go thru itunes? Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? Many thanks Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 16, 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2117 - Release Date: 05/15/09 17:55:00 From familyvoices at inpress.pledgonline.com Sat May 16 18:20:24 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 09:20:24 +0800 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$agedgd@ipmail01.adl6.internode.on.net> References: <004901c9d5d7$c6d3bd20$547b3760$@com> <7rkm5b$agedgd@ipmail01.adl6.internode.on.net> Message-ID: <008d01c9d68d$a7c8d760$f75a8620$@com> Yeah, "same as others" is as good as we can get when we go for typical lives. Always remember our typical lives are not perfect lives. They are messy and full of mistakes, few of us have personal future plans and maybe not even "to do" lists. Thus thinking individually around a child is a good idea for all kids IEP for "this one only" is really a "throwback" of the "special needs" baggage that we inherited from that, maybe well intended, but silly thinking. Once a school looks at it they get lost because there is no IEP objective that says, Mac shall be recognized as a typical boy at least 80% of the time for 52 weeks with no more than 2 errors. It is instead about the hoops Mac and only Mac should be jumping to be seen as "developing". When we step outside of special world paradigm into inclusionary one, the goal is systemic and setting change and not some more than typical child change. (e.g. The coherent measurement tools should be the school's capacity growth towards greater inclusion and not Mac's growth towards "earning" inclusion. Thus my quip of "having a pulse" as enough measurement for the child in terms of being 'ready' for inclusion.) THEN, in terms of measurement, it becomes a matter of how do we measure (or DO WE) measure all children? And then how do we adapt this measurement to include Mac? (If we can't, it is again OUR capacity that is low in not knowing how to adapt that is the inclusionary issue and not Mac "needing" "different" measurement.) Of course you WILL run into measurement and curricular things that one wonders', IS THIS RELEVANT FOR MAC? One should next ask (is it relevant for any of these kids?!! Often we never question this later one until the child with an impairment challenges us to look at some of the dumb things we ask all the kids to do .. YET another advantage of having a child that makes us question. We must learn to "read" the responses of educators, principals in terms of where their questions are coming from. My "read" is that the person may be a nice enough person but is utterly lost because he has yet to meet Mac. He does not "see" typical boy behind the medical gadgets and labels, special processes s/he is asked to complete. Until s/he does, s/he will remain quite confused. There was a seminal article written by a teacher call, "I counted Jon" that describes how he could not "see" this child as one of his class members and had unconsciously left him off the role. He had an epiphany somewhere along the way and finally "saw" Jon as a boy. This is something we need to understand. It is like the old psych 101 exercise of the mind's perception of the picture that has 2 views -an hour glass and a women, 2 very different faces etc. Some students can NOT "see" both views and others see one view or the other. They get angery, frustrated when their pees try to describe a view they cannot see, until they finally "get it". AHHHha People's "fear" of our family members is deeply expressed through these very same reactions. This is the "do they get it"? Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac J Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sat May 16 20:31:57 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 13:31:57 +1000 Subject: FV: What is inclusion? In-Reply-To: Message-ID: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don't go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sat May 16 21:33:16 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 14:33:16 +1000 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> Message-ID: <8ABC9A53BFD842D8BBF225E97FF7FE59@dell91> Thanks Gina That is great Info. I have joined the prologue group just wanted to test the water where I felt safe before asking what I see as maybe dump questions. Sarah has been with the ipod all morning A SUCCESS!! she has shown me how to move programs around already. When I was buying our Ipod ,I did have discussions with my friends (the Fab 5) a comment that was made was that the iphone is possible not as shock proof as the ipod touch??? I was also wary with Sarah getting onto japan or maybe even Canada and having a chat with Wendy :) I have bought the silicone case and cover screen, which is 5 mins Miss Sarah took all off Hmmmmm You and Shawn sound a great team, and one to be very mindful of. Shawn's research sounds really interesting keep us posted the rolling stones can turn into great big rocks. Something like that anyway. Tis Sunday and I am having to type up notes for work which really pisses me off. Take care And again big thank you I feel so much braver now with technology. It also amazes me how we can be under a rock when you don't have the right people to connect with. Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 1:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don' t go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Sat May 16 23:39:21 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 16:39:21 +1000 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> Message-ID: <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> HI Gina Just been skyping with Anita. Wow is that scary I think the rule should be only head for camera. I have also just gone to itunes and downloaded away the podcasts?? What are they? Is anyone interested in skypeing? Cheers Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 1:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don' t go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Sat May 16 23:40:18 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 16:40:18 +1000 Subject: FV: What is inclusion? In-Reply-To: <008d01c9d68d$a7c8d760$f75a8620$@com> References: <004901c9d5d7$c6d3bd20$547b3760$@com><7rkm5b$agedgd@ipmail01.adl6.internode.on.net> <008d01c9d68d$a7c8d760$f75a8620$@com> Message-ID: Hi Darrell Can we bottle you for safe keeping? Thank you!! Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 11:20 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Yeah, "same as others" is as good as we can get when we go for typical lives. Always remember our typical lives are not perfect lives. They are messy and full of mistakes, few of us have personal future plans and maybe not even "to do" lists. Thus thinking individually around a child is a good idea for all kids IEP for "this one only" is really a "throwback" of the "special needs" baggage that we inherited from that, maybe well intended, but silly thinking. Once a school looks at it they get lost because there is no IEP objective that says, Mac shall be recognized as a typical boy at least 80% of the time for 52 weeks with no more than 2 errors. It is instead about the hoops Mac and only Mac should be jumping to be seen as "developing". When we step outside of special world paradigm into inclusionary one, the goal is systemic and setting change and not some more than typical child change. (e.g. The coherent measurement tools should be the school' s capacity growth towards greater inclusion and not Mac's growth towards "earning" inclusion. Thus my quip of "having a pulse" as enough measurement for the child in terms of being 'ready' for inclusion.) THEN, in terms of measurement, it becomes a matter of how do we measure (or DO WE) measure all children? And then how do we adapt this measurement to include Mac? (If we can't, it is again OUR capacity that is low in not knowing how to adapt that is the inclusionary issue and not Mac "needing" "different" measurement.) Of course you WILL run into measurement and curricular things that one wonders', IS THIS RELEVANT FOR MAC? One should next ask (is it relevant for any of these kids?!! Often we never question this later one until the child with an impairment challenges us to look at some of the dumb things we ask all the kids to do .. YET another advantage of having a child that makes us question. We must learn to "read" the responses of educators, principals in terms of where their questions are coming from. My "read" is that the person may be a nice enough person but is utterly lost because he has yet to meet Mac. He does not "see" typical boy behind the medical gadgets and labels, special processes s/he is asked to complete. Until s/he does, s/he will remain quite confused. There was a seminal article written by a teacher call, "I counted Jon" that describes how he could not "see" this child as one of his class members and had unconsciously left him off the role. He had an epiphany somewhere along the way and finally "saw" Jon as a boy. This is something we need to understand. It is like the old psych 101 exercise of the mind's perception of the picture that has 2 views -an hour glass and a women, 2 very different faces etc. Some students can NOT "see" both views and others see one view or the other. They get angery, frustrated when their pees try to describe a view they cannot see, until they finally "get it". AHHHha People's "fear" of our family members is deeply expressed through these very same reactions. This is the "do they get it"? Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac J Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Sun May 17 03:30:45 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 20:30:45 +1000 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$aggkc2@ipmail01.adl6.internode.on.net> References: <006a01c9d5f7$97de0c80$c79a2580$@com> <7rkm5b$aggkc2@ipmail01.adl6.internode.on.net> Message-ID: <645B849DA6CB4C64A8D276E363792572@SWEENEYDESKTOP> Hi Gina Only you can ascertain if the question from the school was sinister in intention or just another question in their search for what to do. I think it is a perfectly legitimate question for a school to ask to establish the ground work of mutual expectations. They would get a different answer from different parents like "just love him" through to "!00% total hands on engagement all day every day". Every parent and every school is different in their expectations of schools, teachers, families and inclusive practice and the school establishing the lay of the land in relation to your expectations is very important for an open, healthy happy relationship between the two of you into the future. Personally I believe that Mac has the right to be as bored and disengaged as every other child in the class in the ebb and flow of a typical school day. I think the real question is engaged in what???? Joscelyn does not have the capacity to be engaged in curriculum all the time. If she experiences a particularly taxing thinking task she needs down time to mentally recover for the next one. If this is not respected she will typically have a major meltdown which involved lots of screaming and flinging of limbs in her early school career. High school is brilliant in this respect as the movement, packing up and settling down from class to class builds in these breaks perfectly in a legitimate way. Some parents are so in love with the early years are the most important year's philosophy that their children really don't get to enjoy a childhood because every moment is programmed within an inch of existence for outcomes, outcomes, outcomes. This is usually the argument for a fulltime aide which usually leave the child no time for the hum drum of what happens in the waiting time as an adult is always present impeding typical child interactions. I know that waiting is too much of the time at school but a hell of a lot of learning goes on in waiting time such as the sniggering of seeing the teacher undies, who is going to play catch and kiss at lunch and the bands in JJJ's hottest 100. This is how children learn to be their age and you don't learn to be 20 before you have been 10 or 15. This side of school is also engagement. Some students need to have a bed set up at the back of the room so they can have a little kip when they get tired, some kids need to sing or make noise, some kids need to pace, some need to draw and doodle. None of this means that the students aren't engaged it just respects the way they interact with the world. Typical classroom teachers don't know this until they get to know the child and asking questions is a good way initially. Just this week the TAFE teachers contacted us as they thought Jos wasn't engaged in the Child Studies class she is doing as she sits with her head down often drawing as they teach. We assured them that, TAFE is the highlight of her week and she tells us snippets of her time at TAFE with catching the town bus independently with her friends, and the canteen being the best bits..surely better than OH+S and Legislation. Once they knew she was OK and we were OK they were OK too. The bottom line for me is that every lesson plan must incorporate Macs learning needs as outlined in the IEP or planning meetings. These learning needs may be very diverse; social, physical, intellectual, communicative etc, etc. He is thought about in every lesson however there is a mixture of outcomes for him depending on the mood of the day. I know this isn't prescriptive however no two days at school are the same for any child and Mac's education needs to be as fluid as the other kids or it will set him apart. Only you can know if you think the school is intentionally leaving Mac out ....... usually it's mothers intuition. Rest assured even when our daughters educational experience has been very ordinary it has been better than any alternative. Cheers, meg _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. 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Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sun May 17 03:48:14 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 18:48:14 +0800 Subject: FV: What is inclusion? In-Reply-To: <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> Message-ID: <003001c9d6dc$fae9b820$f0bd2860$@net.au> Hi Everyone, It is 5pm West Aussie time and I have been sitting here with a loooovely glass of Cab/Sav catching up on the conversation on FV learning from one of my favourite sources. I am feeling pleasantly tired after being away to a Velor Microboard Weekend at Fairbridge (just north of Pinjarra) with another amazing group of people from all over the state learning more about inclusion and how to invite others to be an integral part of our sons life. While I was learning this stuff Dan was out having fun on the flying fox, abseiling, bush walking etc supported by new friends..... Would like to share this story from the weekend, Dan and a young man, Jack connected with one another on Saturday, I only discovered the connection this morning when Jack walked by at breakfast and I saw Dan's arm shoot up to give him a 'high five', Jack stopped, said good morning, how are you mate, had a bit more of a chat and went off to have brekky. The abseiling was happening after breakfast and after some discussion with the Coordinator she approached Jack to ask if he would take Dan abseiling which he readily agreed to. When lunch time came around, Dan arrived back at the hall with Steve, minus Jack - I was wondering if everything went ok and decided to follow up with him when I could. 15 minutes later he came in and sat down, I thanked him for helping Dan out and he said "it's me that will be thanking Dan", he explained that he had never abseiled before so prior to taking Dan up he did a dummy run on his own, then he went up and down with Dan. After everyone had had their turn the instructor offered Jack a weekend job, Jack said he didn't know much about abseiling and the response was "if you can support someone the way you did with Dan, talking to him all the way up and down, helping him out where he needed, you know everything you need to know". Jack was stoked (he's 16) and I was in awe of him being so appreciative of Dan who helped him get the job. One day I'll stop being surprised but right now I still get caught out with how there are others who are so appreciative of our kids. Just wanted to share a warm and fuzzy - they help me keep going with the other hard slog stuff we have to face - thank goodness for these little gems. I have some education stuff happening (negative) but don't want to go into it just now after my enjoyable weekend so will ask for some comments at another time when I'm ready to tackle it.......wish it could be never! Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 2:39 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? HI Gina Just been skyping with Anita. Wow is that scary I think the rule should be only head for camera. I have also just gone to itunes and downloaded away the podcasts?? What are they? Is anyone interested in skypeing? Cheers Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 1:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don' t go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Sun May 17 04:10:21 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 21:10:21 +1000 Subject: FV: What is inclusion? In-Reply-To: <645B849DA6CB4C64A8D276E363792572@SWEENEYDESKTOP> Message-ID: <7rkm5b$agrs2g@ipmail01.adl6.internode.on.net> Thanks Meg as always. I am not convinced there is anything too sinister at this stage. I think they are feeling pressured and overwhelmed by their own shortcomings so are essentially deflecting some of that back to us (unsuccessfully). It hasn't helped that Mac's very experienced Kindy teacher (and DeputyPrincipal) has been replaced for the next 2 terms by a fairly young teacher (who is lovely) but as the DET seconded Mac's teacher to educate the district about the Best Start testing etc I think that has made things a little more difficult and meant any continuity we had in teaching was lost and exacerbated by their mucking around with changing aides around so that continuity was lost too. Thanks for those great words, I will paraphrase some of those concepts in our meeting with them tomorrow. Regards Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina Only you can ascertain if the question from the school was sinister in intention or just another question in their search for what to do. I think it is a perfectly legitimate question for a school to ask to establish the ground work of mutual expectations. They would get a different answer from different parents like "just love him" through to "!00% total hands on engagement all day every day". Every parent and every school is different in their expectations of schools, teachers, families and inclusive practice and the school establishing the lay of the land in relation to your expectations is very important for an open, healthy happy relationship between the two of you into the future. Personally I believe that Mac has the right to be as bored and disengaged as every other child in the class in the ebb and flow of a typical school day. I think the real question is engaged in what???? Joscelyn does not have the capacity to be engaged in curriculum all the time. If she experiences a particularly taxing thinking task she needs down time to mentally recover for the next one. If this is not respected she will typically have a major meltdown which involved lots of screaming and flinging of limbs in her early school career. High school is brilliant in this respect as the movement, packing up and settling down from class to class builds in these breaks perfectly in a legitimate way. Some parents are so in love with the early years are the most important year's philosophy that their children really don't get to enjoy a childhood because every moment is programmed within an inch of existence for outcomes, outcomes, outcomes. This is usually the argument for a fulltime aide which usually leave the child no time for the hum drum of what happens in the waiting time as an adult is always present impeding typical child interactions. I know that waiting is too much of the time at school but a hell of a lot of learning goes on in waiting time such as the sniggering of seeing the teacher undies, who is going to play catch and kiss at lunch and the bands in JJJ's hottest 100. This is how children learn to be their age and you don't learn to be 20 before you have been 10 or 15. This side of school is also engagement. Some students need to have a bed set up at the back of the room so they can have a little kip when they get tired, some kids need to sing or make noise, some kids need to pace, some need to draw and doodle. None of this means that the students aren't engaged it just respects the way they interact with the world. Typical classroom teachers don't know this until they get to know the child and asking questions is a good way initially. Just this week the TAFE teachers contacted us as they thought Jos wasn't engaged in the Child Studies class she is doing as she sits with her head down often drawing as they teach. We assured them that, TAFE is the highlight of her week and she tells us snippets of her time at TAFE with catching the town bus independently with her friends, and the canteen being the best bits..surely better than OH+S and Legislation. Once they knew she was OK and we were OK they were OK too. The bottom line for me is that every lesson plan must incorporate Macs learning needs as outlined in the IEP or planning meetings. These learning needs may be very diverse; social, physical, intellectual, communicative etc, etc. He is thought about in every lesson however there is a mixture of outcomes for him depending on the mood of the day. I know this isn't prescriptive however no two days at school are the same for any child and Mac's education needs to be as fluid as the other kids or it will set him apart. Only you can know if you think the school is intentionally leaving Mac out ....... usually it's mothers intuition. Rest assured even when our daughters educational experience has been very ordinary it has been better than any alternative. Cheers, meg _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. 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URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sun May 17 05:29:27 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 22:29:27 +1000 Subject: FV: What is inclusion? In-Reply-To: <003001c9d6dc$fae9b820$f0bd2860$@net.au> References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> Message-ID: <000901c9d6eb$1e8f3490$5bad9db0$@com> Jo - I just wanted to I LOVED the story - thanks. I'm heading for the fridge for the chardy to celebrate alongside you. Enjoy this precious moment. Anita :) PS - I did grade 4 in Pinjarra Primary school (I won't admit to what year...) -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Everyone, It is 5pm West Aussie time and I have been sitting here with a loooovely glass of Cab/Sav catching up on the conversation on FV learning from one of my favourite sources. I am feeling pleasantly tired after being away to a Velor Microboard Weekend at Fairbridge (just north of Pinjarra) with another amazing group of people from all over the state learning more about inclusion and how to invite others to be an integral part of our sons life. While I was learning this stuff Dan was out having fun on the flying fox, abseiling, bush walking etc supported by new friends..... Would like to share this story from the weekend, Dan and a young man, Jack connected with one another on Saturday, I only discovered the connection this morning when Jack walked by at breakfast and I saw Dan's arm shoot up to give him a 'high five', Jack stopped, said good morning, how are you mate, had a bit more of a chat and went off to have brekky. The abseiling was happening after breakfast and after some discussion with the Coordinator she approached Jack to ask if he would take Dan abseiling which he readily agreed to. When lunch time came around, Dan arrived back at the hall with Steve, minus Jack - I was wondering if everything went ok and decided to follow up with him when I could. 15 minutes later he came in and sat down, I thanked him for helping Dan out and he said "it's me that will be thanking Dan", he explained that he had never abseiled before so prior to taking Dan up he did a dummy run on his own, then he went up and down with Dan. After everyone had had their turn the instructor offered Jack a weekend job, Jack said he didn't know much about abseiling and the response was "if you can support someone the way you did with Dan, talking to him all the way up and down, helping him out where he needed, you know everything you need to know". Jack was stoked (he's 16) and I was in awe of him being so appreciative of Dan who helped him get the job. One day I'll stop being surprised but right now I still get caught out with how there are others who are so appreciative of our kids. Just wanted to share a warm and fuzzy - they help me keep going with the other hard slog stuff we have to face - thank goodness for these little gems. I have some education stuff happening (negative) but don't want to go into it just now after my enjoyable weekend so will ask for some comments at another time when I'm ready to tackle it.......wish it could be never! Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 2:39 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? HI Gina Just been skyping with Anita. Wow is that scary I think the rule should be only head for camera. I have also just gone to itunes and downloaded away the podcasts?? What are they? Is anyone interested in skypeing? Cheers Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 1:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don' t go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Sun May 17 05:31:23 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 22:31:23 +1000 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$agrs2g@ipmail01.adl6.internode.on.net> References: <645B849DA6CB4C64A8D276E363792572@SWEENEYDESKTOP> <7rkm5b$agrs2g@ipmail01.adl6.internode.on.net> Message-ID: <000a01c9d6eb$63cc6cd0$2b654670$@com> Good luck with the meeting tomorrow, Gina. We're with you in spirit! Best wishes Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 9:10 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Meg as always. I am not convinced there is anything too sinister at this stage. I think they are feeling pressured and overwhelmed by their own shortcomings so are essentially deflecting some of that back to us (unsuccessfully). It hasn't helped that Mac's very experienced Kindy teacher (and DeputyPrincipal) has been replaced for the next 2 terms by a fairly young teacher (who is lovely) but as the DET seconded Mac's teacher to educate the district about the Best Start testing etc I think that has made things a little more difficult and meant any continuity we had in teaching was lost and exacerbated by their mucking around with changing aides around so that continuity was lost too. Thanks for those great words, I will paraphrase some of those concepts in our meeting with them tomorrow. Regards Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina Only you can ascertain if the question from the school was sinister in intention or just another question in their search for what to do. I think it is a perfectly legitimate question for a school to ask to establish the ground work of mutual expectations. They would get a different answer from different parents like "just love him" through to "!00% total hands on engagement all day every day". Every parent and every school is different in their expectations of schools, teachers, families and inclusive practice and the school establishing the lay of the land in relation to your expectations is very important for an open, healthy happy relationship between the two of you into the future. Personally I believe that Mac has the right to be as bored and disengaged as every other child in the class in the ebb and flow of a typical school day. I think the real question is engaged in what???? Joscelyn does not have the capacity to be engaged in curriculum all the time. If she experiences a particularly taxing thinking task she needs down time to mentally recover for the next one. If this is not respected she will typically have a major meltdown which involved lots of screaming and flinging of limbs in her early school career. High school is brilliant in this respect as the movement, packing up and settling down from class to class builds in these breaks perfectly in a legitimate way. Some parents are so in love with the early years are the most important year's philosophy that their children really don't get to enjoy a childhood because every moment is programmed within an inch of existence for outcomes, outcomes, outcomes. This is usually the argument for a fulltime aide which usually leave the child no time for the hum drum of what happens in the waiting time as an adult is always present impeding typical child interactions. I know that waiting is too much of the time at school but a hell of a lot of learning goes on in waiting time such as the sniggering of seeing the teacher undies, who is going to play catch and kiss at lunch and the bands in JJJ's hottest 100. This is how children learn to be their age and you don't learn to be 20 before you have been 10 or 15. This side of school is also engagement. Some students need to have a bed set up at the back of the room so they can have a little kip when they get tired, some kids need to sing or make noise, some kids need to pace, some need to draw and doodle. None of this means that the students aren't engaged it just respects the way they interact with the world. Typical classroom teachers don't know this until they get to know the child and asking questions is a good way initially. Just this week the TAFE teachers contacted us as they thought Jos wasn't engaged in the Child Studies class she is doing as she sits with her head down often drawing as they teach. We assured them that, TAFE is the highlight of her week and she tells us snippets of her time at TAFE with catching the town bus independently with her friends, and the canteen being the best bits..surely better than OH+S and Legislation. Once they knew she was OK and we were OK they were OK too. The bottom line for me is that every lesson plan must incorporate Macs learning needs as outlined in the IEP or planning meetings. These learning needs may be very diverse; social, physical, intellectual, communicative etc, etc. He is thought about in every lesson however there is a mixture of outcomes for him depending on the mood of the day. I know this isn't prescriptive however no two days at school are the same for any child and Mac's education needs to be as fluid as the other kids or it will set him apart. Only you can know if you think the school is intentionally leaving Mac out ....... usually it's mothers intuition. Rest assured even when our daughters educational experience has been very ordinary it has been better than any alternative. Cheers, meg _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac J Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sun May 17 05:39:14 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 17 May 2009 22:39:14 +1000 Subject: FV: What is inclusion? In-Reply-To: <000a01c9d6eb$63cc6cd0$2b654670$@com> Message-ID: <7rkm5b$agskji@ipmail01.adl6.internode.on.net> Jo, great story to share - how fantastic Thanks Anita, not stressing about the meeting, we (well the school more so than us) are "in the learning pit" from the pit can come great things. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 10:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Good luck with the meeting tomorrow, Gina. We're with you in spirit! Best wishes Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 9:10 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Meg as always. I am not convinced there is anything too sinister at this stage. I think they are feeling pressured and overwhelmed by their own shortcomings so are essentially deflecting some of that back to us (unsuccessfully). It hasn't helped that Mac's very experienced Kindy teacher (and DeputyPrincipal) has been replaced for the next 2 terms by a fairly young teacher (who is lovely) but as the DET seconded Mac's teacher to educate the district about the Best Start testing etc I think that has made things a little more difficult and meant any continuity we had in teaching was lost and exacerbated by their mucking around with changing aides around so that continuity was lost too. Thanks for those great words, I will paraphrase some of those concepts in our meeting with them tomorrow. Regards Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina Only you can ascertain if the question from the school was sinister in intention or just another question in their search for what to do. I think it is a perfectly legitimate question for a school to ask to establish the ground work of mutual expectations. They would get a different answer from different parents like "just love him" through to "!00% total hands on engagement all day every day". Every parent and every school is different in their expectations of schools, teachers, families and inclusive practice and the school establishing the lay of the land in relation to your expectations is very important for an open, healthy happy relationship between the two of you into the future. Personally I believe that Mac has the right to be as bored and disengaged as every other child in the class in the ebb and flow of a typical school day. I think the real question is engaged in what???? Joscelyn does not have the capacity to be engaged in curriculum all the time. If she experiences a particularly taxing thinking task she needs down time to mentally recover for the next one. If this is not respected she will typically have a major meltdown which involved lots of screaming and flinging of limbs in her early school career. High school is brilliant in this respect as the movement, packing up and settling down from class to class builds in these breaks perfectly in a legitimate way. Some parents are so in love with the early years are the most important year's philosophy that their children really don't get to enjoy a childhood because every moment is programmed within an inch of existence for outcomes, outcomes, outcomes. This is usually the argument for a fulltime aide which usually leave the child no time for the hum drum of what happens in the waiting time as an adult is always present impeding typical child interactions. I know that waiting is too much of the time at school but a hell of a lot of learning goes on in waiting time such as the sniggering of seeing the teacher undies, who is going to play catch and kiss at lunch and the bands in JJJ's hottest 100. This is how children learn to be their age and you don't learn to be 20 before you have been 10 or 15. This side of school is also engagement. Some students need to have a bed set up at the back of the room so they can have a little kip when they get tired, some kids need to sing or make noise, some kids need to pace, some need to draw and doodle. None of this means that the students aren't engaged it just respects the way they interact with the world. Typical classroom teachers don't know this until they get to know the child and asking questions is a good way initially. Just this week the TAFE teachers contacted us as they thought Jos wasn't engaged in the Child Studies class she is doing as she sits with her head down often drawing as they teach. We assured them that, TAFE is the highlight of her week and she tells us snippets of her time at TAFE with catching the town bus independently with her friends, and the canteen being the best bits..surely better than OH+S and Legislation. Once they knew she was OK and we were OK they were OK too. The bottom line for me is that every lesson plan must incorporate Macs learning needs as outlined in the IEP or planning meetings. These learning needs may be very diverse; social, physical, intellectual, communicative etc, etc. He is thought about in every lesson however there is a mixture of outcomes for him depending on the mood of the day. I know this isn't prescriptive however no two days at school are the same for any child and Mac's education needs to be as fluid as the other kids or it will set him apart. Only you can know if you think the school is intentionally leaving Mac out ....... usually it's mothers intuition. Rest assured even when our daughters educational experience has been very ordinary it has been better than any alternative. Cheers, meg _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sun May 17 16:02:53 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 18 May 2009 09:02:53 +1000 Subject: FV: What is inclusion? References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> Message-ID: Yeah me Jane. But our computer is in the study on it's own and I don't hear it unless I am at the computer. I'll set it up and call you soon Maureen ----- Original Message ----- From: "Family Voices" To: Sent: Sunday, May 17, 2009 4:39 PM Subject: Re: FV: What is inclusion? > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should > be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What > are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > From familyvoices at inpress.pledgonline.com Sun May 17 20:31:57 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 18 May 2009 13:31:57 +1000 Subject: FV: Kathie Snow (Read-Only).pdf - Adobe Reader Message-ID: <001501c9d769$333180f0$999482d0$@Speed@mamre.org.au> Hi all - thought this was good. Anita -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: Kathie Snow (Read-Only).pdf Type: application/pdf Size: 9247 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sun May 17 22:59:03 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 18 May 2009 15:59:03 +1000 Subject: FV: Kathie Snow (Read-Only).pdf - Adobe Reader References: <001501c9d769$333180f0$999482d0$@Speed@mamre.org.au> Message-ID: I love this. Thanks Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 18, 2009 1:31 PM Subject: FV: Kathie Snow (Read-Only).pdf - Adobe Reader Hi all - thought this was good. Anita -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 18 01:53:12 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 18 May 2009 18:53:12 +1000 Subject: FV: What is inclusion? In-Reply-To: <003001c9d6dc$fae9b820$f0bd2860$@net.au> References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net><132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> Message-ID: Fantastic Jo.....we too are a product of our upbringing and are learning along the way in relation to the reciprocal relationship that is to be had with our loved ones. I know I shouldn't be surprised when a really lovely encounter happens but I am. I cherish the thought that these encounters will be so frequent that they become the norm. I hope the school stuff isn't too terrible. Is some sort of transition from school to post school life, talk happened yet ? What are the options being presented for Dan ? Do you have support in thinking of and enacting a future for him that will provide a good life in the community? Megs -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Everyone, It is 5pm West Aussie time and I have been sitting here with a loooovely glass of Cab/Sav catching up on the conversation on FV learning from one of my favourite sources. I am feeling pleasantly tired after being away to a Velor Microboard Weekend at Fairbridge (just north of Pinjarra) with another amazing group of people from all over the state learning more about inclusion and how to invite others to be an integral part of our sons life. While I was learning this stuff Dan was out having fun on the flying fox, abseiling, bush walking etc supported by new friends..... Would like to share this story from the weekend, Dan and a young man, Jack connected with one another on Saturday, I only discovered the connection this morning when Jack walked by at breakfast and I saw Dan's arm shoot up to give him a 'high five', Jack stopped, said good morning, how are you mate, had a bit more of a chat and went off to have brekky. The abseiling was happening after breakfast and after some discussion with the Coordinator she approached Jack to ask if he would take Dan abseiling which he readily agreed to. When lunch time came around, Dan arrived back at the hall with Steve, minus Jack - I was wondering if everything went ok and decided to follow up with him when I could. 15 minutes later he came in and sat down, I thanked him for helping Dan out and he said "it's me that will be thanking Dan", he explained that he had never abseiled before so prior to taking Dan up he did a dummy run on his own, then he went up and down with Dan. After everyone had had their turn the instructor offered Jack a weekend job, Jack said he didn't know much about abseiling and the response was "if you can support someone the way you did with Dan, talking to him all the way up and down, helping him out where he needed, you know everything you need to know". Jack was stoked (he's 16) and I was in awe of him being so appreciative of Dan who helped him get the job. One day I'll stop being surprised but right now I still get caught out with how there are others who are so appreciative of our kids. Just wanted to share a warm and fuzzy - they help me keep going with the other hard slog stuff we have to face - thank goodness for these little gems. I have some education stuff happening (negative) but don't want to go into it just now after my enjoyable weekend so will ask for some comments at another time when I'm ready to tackle it.......wish it could be never! Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 2:39 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? HI Gina Just been skyping with Anita. Wow is that scary I think the rule should be only head for camera. I have also just gone to itunes and downloaded away the podcasts?? What are they? Is anyone interested in skypeing? Cheers Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 1:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don' t go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Mon May 18 03:04:28 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 18 May 2009 20:04:28 +1000 Subject: FV: What is inclusion? In-Reply-To: References: <006a01c9d5f7$97de0c80$c79a2580$@com><7rkm5b$aggkc2@ipmail01.adl6.internode.on.net> Message-ID: <41DF3C0BC2DA4951BD79543C99B70FED@SWEENEYDESKTOP> Hi Jane and everyone else I had some thoughts in relation to Sarah's ipod and content. I know in past emails the discussion in relation to age appropriate interests has been a feature. I'm using headings again to keep me focused and hopefully make my ramblings easier to follow. I find all of the issues raised are complex on many levels and how to tackle them is multi faceted, forgive me. PRIVATE AND PUBLIC As our young people get older, as we have witnessed in Canada, adult expectations become a very real part of enacting an included life. We need to have faith ourselves that our people can develop adult identities within an adult framework. Some of our family members will need more assistance with this than others as in essence others are often making choices on their behalf. We need to be mindful of the image and message we surround our person with in the wider community, in a crude way I'll call it marketing. If the marketing suggests that our 18 year old likes infant music, wears bibs, is referred to in baby nic names or any childish stuff then this reinforces the general public's unconscious view that they are a child forever. We know that children don't have jobs, a home of their own a sexuality etc. So the expectation that is set up denies our loved ones all sorts of adult opportunities that we are trying really hard to get going. Mixed messages are being sent about who this person really is which naturally confuses people. In respect of the person that may love some of these things, a way to deal with this as people get older is to have the public face and the private face. In reality we all do this. I hate wearing a bra and as soon as I'm in the door off it comes and is hung on the nearest doorknob.....hence I'll never run a B+B. Equally Jos likes some childish things however we ensure she enjoys these in the privacy of her own home in the arms of her loved ones that don't degrade her for this enjoyment. In public we make a concerted effort as a family to be very conscious of marketing an adult persona for her. We talk with her about the difference between home and out and she appreciates the difference, she knows that her likes are not being denied they are appropriate to the environment. She wants to be treated as an adult and is learning to understand that. That said we are looking forward to her having nieces and nephews that share her enthusiasm for digging holes at the beach. We frequently accost unsuspecting children facilitating their sandcastle building with Joscelyn's well developed prowess as it is acceptable to dig as an adult with children but not alone. We could get into the whole "buying into the publics acceptability not being what it should" blah, blah, blah, however I'm not prepared to go to work and shop braless so expecting Jos, who is much more vulnerable, to not conform the best she can to social age appropriate norms would be very hypocritical. MOVING ALONG WITH AGE APPROPRIATE STUFF For some of us I'd have to ask who exactly is stuck in the age rut. I have been fortunate having Jos sandwiched closely between two children who have dragged me along with their changing likes and interests thus affording Jos the opportunity to experience this progression too. Months turn into years and years turn into decades and we are still dishing out the same old stuff simply cause time has got away and out young ones cant request a change on their own behalf. Early childhood stuff is very well marketed and easily found for parents whereas teenage or adult stuff is more diverse and there-fore difficult to narrow down as far as popularity. I believe the general rules of what is popular for littlies applies for all other ages. ie any record that is very popular or a hit chances are that people with disabilities will like it too. Some of the attachment may be comfort and familiarity so introducing different stuff over time in measured doses it the way to go. It might not be your gig but tuning the radio to JJJ or the local top 40 station while in the car may bring some pleasant results for you as well as your family member. My children have helped me move on from Linda Ronstadt that's for sure. I did find folk groups such as Peter, Paul and Mary, the Seekers and Carpenters a bridge for Jos from children's music. Not groovy these days but a step towards an adult sound. Now she loves the more upbeat top 40 stuff and god forbid, high school musical soundtracks however I have a friend who's son loves death metal.....as individual as they are. My advice is get favourite playlists from any young people you know, download away, and play, play, play. You'll soon know what your person loves. Dressing takes the eye of someone their own age so enlisting a fashion recruit is vital. I have approached Daniels girl school friends who have jumped at the chance to 'STYLE' Jos and Jos was much happier shopping with them than me. I still had to offer advice in relation to manageability and practicality that the girls took on board. Just be ready with the credit card. There is heaps more to this issue and it's not trivial, the foundation starts with us taking on the idea that our family member is older and capable of developing into adulthood and enjoying adult things, this mindset will allow opportunities to flourish. Love to all Megs P.S. House on market, Todd leaves in 3 weeks, freaking out..........YES! -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 10:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. Q/Which manual or directions do you think are the simplest for programming? Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Can I download a dvd to ipod direct or does everything have to go thru itunes? Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? Many thanks Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 16, 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2117 - Release Date: 05/15/09 17:55:00 From familyvoices at inpress.pledgonline.com Mon May 18 04:45:59 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 18 May 2009 21:15:59 +0930 Subject: FV: What is inclusion? In-Reply-To: <003001c9d6dc$fae9b820$f0bd2860$@net.au> References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> Message-ID: Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _________________________________________________________________ Looking to change your car this year? Find car news, reviews and more http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fsecure%2Dau%2Eimrworldwide%2Ecom%2Fcgi%2Dbin%2Fa%2Fci%5F450304%2Fet%5F2%2Fcg%5F801459%2Fpi%5F1004813%2Fai%5F859641&_t=762955845&_r=tig_OCT07&_m=EXT -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 18 05:37:17 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 18 May 2009 22:37:17 +1000 Subject: FV: What is inclusion? In-Reply-To: <41DF3C0BC2DA4951BD79543C99B70FED@SWEENEYDESKTOP> Message-ID: <7s25l8$bdcbjq@ipmail05.adl2.internode.on.net> Meg Great advice and insight as always. Re the iPods and content choices it certainly helps that on Shawn's computer we have everyone's ipods synched including Shawn, Mac, Cousin Alex (13), Cousin Lucy (10) and Alex's mate Jordan (13) - lots of appropriate and completely inappropriate stuff to choose from - in fact we probably erred the other way not providing Mac enough of the really young stuff in the first few years. I am currently trying to get my head around Ben 10 and all the other things 6yo are in to - ugh. I think I might put that to the school or at least the kids to maybe make me up some crib notes on what's hot and what's not. Bibs... they are the bain of my existence. Even for Mac at 5yo I find them too infantile for my liking. I made some the same colour as the school shirts which has made them less obvious. My lone useful thought on the weekend was to see if there are any second hand sloppy joes/sweaters/jumpers/windcheaters (depending on which state you live in) in the second hand clothing bin at school and simply cut them off around the shoulders and sides - so they almost work like netball bibs. When we are out in public we tend to use salon towels (good size, wash well) or the napkin the restaurant or coffee shop has provided. Otherwise it is back to the sewing machine for me to keep trying for useful size/shape etc. Sorry we didn't find the time to call on you guys when in Wagga, we were pretty pushed fitting everyone in and figured you would be flat out anyway preparing for listing your house etc. We will look forward to catching up when you are down here (and with Todd before that it seems). Gina -- I am using the free version of SPAMfighter. We are a community of 6 million users fighting spam. SPAMfighter has removed 1601 of my spam emails to date. Get the free SPAMfighter here: http://www.spamfighter.com/len The Professional version does not have this message From familyvoices at inpress.pledgonline.com Mon May 18 06:14:29 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 18 May 2009 23:14:29 +1000 Subject: FV: School Meeting & Thanks from Gina In-Reply-To: <7s25l8$bdcbjq@ipmail05.adl2.internode.on.net> Message-ID: <7s25l8$bdct1n@ipmail05.adl2.internode.on.net> Thank you to everyone for your fantastic advice. The meeting with the school went well. Just as a recap this was very much for us to bring some information and ideas to the table to ensure we were all on the same page about what Inclusion actually is. The principal has done amazingly well in the two weeks since our last meeting. She has started researching around the topic reading stuff from Mara Sapon-Shevin (who is speaking at the Family Advocacy Conference this week). They have booked the teacher who is the inclusion officer from our school into the Friday session of this conference (I think I understood that correctly). She has acknowledged that her understanding of inclusion was a long way from what it really means to us and admitted to some embarrassment around this - I am pretty impressed... this is a pretty strong willed/strong minded woman who doesn't flip flop, doesn't embrace change readily - this is significant to her and for her. She felt that her biggest shift in thinking was our explanation last meeting that the ultimate goal for Mac would be able to attend school without the need for a teachers aide because the curriculum modifications, peer supports, strategies and technology would meet his needs. He will always need a personal support person for feeding/toileting but not a baby sitter. This was her big realisation. She knows she is just at the start of the learning, but is enjoying the learning so far. >From my perspective this is a very good start to driving some real shifts in thinking for the school. We are in agreement that the eventual real goal for them is that ultimately the concept of inclusion will be invisible, it will just be education for all. This is what we hoped to see. We partly picked this school and principal because they are already in the business of shared visions, core values etc but also, the principal is a bit of a fighter for kudos. She now knows how the NSW DET is lagging behind, just by the amount of information NOT on their website around inclusive education. The realisation she could be a great 'showcase' on how to shift the thinking etc sits all very nicely with her psyche... I told you we don't play fair. So once again, thank you everyone for you advice, information and support. Jill, thanks for the call today, it was very timely and very useful. Kept us on topic ensured we didn't get caught up in designing a "Mac Plan" for inclusion but rather identified any Mac specific stuff can be covered in his soon to be established Learning Team meeting. Regards Gina PS:. Any advice on successful management of Learning Teams (ie when to hold, who to involve, how regularly eg one full LT every term, interim parent/teacher/aide every month? I am not sure what is appropriate there, figure if anyone knows 'best practice... might as well start there' :-) _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 18 14:20:36 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 19 May 2009 07:20:36 +1000 Subject: FV: What is inclusion? In-Reply-To: <41DF3C0BC2DA4951BD79543C99B70FED@SWEENEYDESKTOP> References: <006a01c9d5f7$97de0c80$c79a2580$@com><7rkm5b$aggkc2@ipmail01.adl6.internode.on.net> <41DF3C0BC2DA4951BD79543C99B70FED@SWEENEYDESKTOP> Message-ID: <778E10A5DFD045E18FE0150A4BCB51E1@dell91> HI Meg and gang Meg thank you! I got home last night late, work is off the planet at the moment (Audit prep so that people can have better lives. ??????????HMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM) as I said won't go there. Any way printed off your words so I could read them at the right time and space. PRIVATE & PUBLIC You put it well as I so relate to the bra thing, must be genetic as Sarah does the same thing when she walks through the door as her mother & Meg. I too have been lucky to have a teenager in the house, I have downloaded all his music as well. Funny though lots of the music comes from our time. Must admit though no Linda R. He has left the scene now to spread his wings which I am very pleased about but i do miss him terrible as does I am sure Sarah. You have given me a injection to make the connection with young people again. I suppose it's the asking stuff that sometimes makes it hard but Jo after reading your wonderful story there is another push. I think sometimes I bash myself up a bit and the connections are happening but I think one that they and aren't and two not enough. I have to keep brining myself back to everyone else ie Bill sat on the computer with his head phones on for 4 years so why does Sarah have to be any different. In saying that it is different Bill had mates in and out. All good stuff to work on. Will go now off to work, have to say struggling a bit working for a organization who say all the right things not sure are so good at the doing. Will see!! Take care all have a great day. Love Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, May 18, 2009 8:04 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane and everyone else I had some thoughts in relation to Sarah's ipod and content. I know in past emails the discussion in relation to age appropriate interests has been a feature. I'm using headings again to keep me focused and hopefully make my ramblings easier to follow. I find all of the issues raised are complex on many levels and how to tackle them is multi faceted, forgive me. PRIVATE AND PUBLIC As our young people get older, as we have witnessed in Canada, adult expectations become a very real part of enacting an included life. We need to have faith ourselves that our people can develop adult identities within an adult framework. Some of our family members will need more assistance with this than others as in essence others are often making choices on their behalf. We need to be mindful of the image and message we surround our person with in the wider community, in a crude way I'll call it marketing. If the marketing suggests that our 18 year old likes infant music, wears bibs, is referred to in baby nic names or any childish stuff then this reinforces the general public's unconscious view that they are a child forever. We know that children don't have jobs, a home of their own a sexuality etc. So the expectation that is set up denies our loved ones all sorts of adult opportunities that we are trying really hard to get going. Mixed messages are being sent about who this person really is which naturally confuses people. In respect of the person that may love some of these things, a way to deal with this as people get older is to have the public face and the private face. In reality we all do this. I hate wearing a bra and as soon as I'm in the door off it comes and is hung on the nearest doorknob.....hence I'll never run a B+B. Equally Jos likes some childish things however we ensure she enjoys these in the privacy of her own home in the arms of her loved ones that don't degrade her for this enjoyment. In public we make a concerted effort as a family to be very conscious of marketing an adult persona for her. We talk with her about the difference between home and out and she appreciates the difference, she knows that her likes are not being denied they are appropriate to the environment. She wants to be treated as an adult and is learning to understand that. That said we are looking forward to her having nieces and nephews that share her enthusiasm for digging holes at the beach. We frequently accost unsuspecting children facilitating their sandcastle building with Joscelyn's well developed prowess as it is acceptable to dig as an adult with children but not alone. We could get into the whole "buying into the publics acceptability not being what it should" blah, blah, blah, however I'm not prepared to go to work and shop braless so expecting Jos, who is much more vulnerable, to not conform the best she can to social age appropriate norms would be very hypocritical. MOVING ALONG WITH AGE APPROPRIATE STUFF For some of us I'd have to ask who exactly is stuck in the age rut. I have been fortunate having Jos sandwiched closely between two children who have dragged me along with their changing likes and interests thus affording Jos the opportunity to experience this progression too. Months turn into years and years turn into decades and we are still dishing out the same old stuff simply cause time has got away and out young ones cant request a change on their own behalf. Early childhood stuff is very well marketed and easily found for parents whereas teenage or adult stuff is more diverse and there-fore difficult to narrow down as far as popularity. I believe the general rules of what is popular for littlies applies for all other ages. ie any record that is very popular or a hit chances are that people with disabilities will like it too. Some of the attachment may be comfort and familiarity so introducing different stuff over time in measured doses it the way to go. It might not be your gig but tuning the radio to JJJ or the local top 40 station while in the car may bring some pleasant results for you as well as your family member. My children have helped me move on from Linda Ronstadt that's for sure. I did find folk groups such as Peter, Paul and Mary, the Seekers and Carpenters a bridge for Jos from children's music. Not groovy these days but a step towards an adult sound. Now she loves the more upbeat top 40 stuff and god forbid, high school musical soundtracks however I have a friend who's son loves death metal.....as individual as they are. My advice is get favourite playlists from any young people you know, download away, and play, play, play. You'll soon know what your person loves. Dressing takes the eye of someone their own age so enlisting a fashion recruit is vital. I have approached Daniels girl school friends who have jumped at the chance to 'STYLE' Jos and Jos was much happier shopping with them than me. I still had to offer advice in relation to manageability and practicality that the girls took on board. Just be ready with the credit card. There is heaps more to this issue and it's not trivial, the foundation starts with us taking on the idea that our family member is older and capable of developing into adulthood and enjoying adult things, this mindset will allow opportunities to flourish. Love to all Megs P.S. House on market, Todd leaves in 3 weeks, freaking out..........YES! -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 10:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. Q/Which manual or directions do you think are the simplest for programming? Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Can I download a dvd to ipod direct or does everything have to go thru itunes? Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? Many thanks Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 16, 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. 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Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2119 - Release Date: 05/17/09 16:58:00 From familyvoices at inpress.pledgonline.com Mon May 18 14:32:04 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 19 May 2009 07:32:04 +1000 Subject: FV: School Meeting & Thanks from Gina In-Reply-To: <7s25l8$bdct1n@ipmail05.adl2.internode.on.net> References: <7s25l8$bdcbjq@ipmail05.adl2.internode.on.net> <7s25l8$bdct1n@ipmail05.adl2.internode.on.net> Message-ID: <0C7180906BB644B785D5BACD5AE6671C@dell91> HI Gina I am possible a bit cynical at this stage but what I have learnt this year and from watching some others is try and stand back. I look at dealing with Education is like some men?? Let them think it is their idea and it will be a success. I know I have made the mistake of being seen as the expert hence people step back for a variety of reasons. Sounds like you are playing the game well. Regards Jane Ps the podcasts are great thanks Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, May 18, 2009 11:14 PM To: familyvoices at inpress.pledgonline.com Subject: FV: School Meeting & Thanks from Gina Thank you to everyone for your fantastic advice. The meeting with the school went well. Just as a recap this was very much for us to bring some information and ideas to the table to ensure we were all on the same page about what Inclusion actually is. The principal has done amazingly well in the two weeks since our last meeting. She has started researching around the topic reading stuff from Mara Sapon-Shevin (who is speaking at the Family Advocacy Conference this week). They have booked the teacher who is the inclusion officer from our school into the Friday session of this conference (I think I understood that correctly). She has acknowledged that her understanding of inclusion was a long way from what it really means to us and admitted to some embarrassment around this - I am pretty impressed... this is a pretty strong willed/strong minded woman who doesn't flip flop, doesn't embrace change readily - this is significant to her and for her. She felt that her biggest shift in thinking was our explanation last meeting that the ultimate goal for Mac would be able to attend school without the need for a teachers aide because the curriculum modifications, peer supports, strategies and technology would meet his needs. He will always need a personal support person for feeding/toileting but not a baby sitter. This was her big realisation. She knows she is just at the start of the learning, but is enjoying the learning so far. >From my perspective this is a very good start to driving some real shifts in thinking for the school. We are in agreement that the eventual real goal for them is that ultimately the concept of inclusion will be invisible, it will just be education for all. This is what we hoped to see. We partly picked this school and principal because they are already in the business of shared visions, core values etc but also, the principal is a bit of a fighter for kudos. She now knows how the NSW DET is lagging behind, just by the amount of information NOT on their website around inclusive education. The realisation she could be a great 'showcase' on how to shift the thinking etc sits all very nicely with her psyche... I told you we don't play fair. So once again, thank you everyone for you advice, information and support. Jill, thanks for the call today, it was very timely and very useful. Kept us on topic ensured we didn't get caught up in designing a "Mac Plan" for inclusion but rather identified any Mac specific stuff can be covered in his soon to be established Learning Team meeting. Regards Gina PS:. Any advice on successful management of Learning Teams (ie when to hold, who to involve, how regularly eg one full LT every term, interim parent/teacher/aide every month? I am not sure what is appropriate there, figure if anyone knows 'best practice... might as well start there' :-) _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2119 - Release Date: 05/17/09 16:58:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 18 15:27:26 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 19 May 2009 08:27:26 +1000 Subject: FV: School Meeting & Thanks from Gina In-Reply-To: <0C7180906BB644B785D5BACD5AE6671C@dell91> References: <7s25l8$bdcbjq@ipmail05.adl2.internode.on.net> <7s25l8$bdct1n@ipmail05.adl2.internode.on.net> <0C7180906BB644B785D5BACD5AE6671C@dell91> Message-ID: Jane We also get the Hamish & Andy podcasts... Mac loves them more than any of the kid centric stuff You are right... All I am trying to do is facilitate their embracing of it... then they can run with it. They are the educators, they are the ones who wanted to be teachers - not me. Gina On 19/05/2009, at 7:32 AM, Family Voices wrote: > HI Gina > > I am possible a bit cynical at this stage but what I have learnt > this year and from watching some others is try and stand back. I > look at dealing with Education is like some men?? Let them think it > is their idea and it will be a success. I know I have made the > mistake of being seen as the expert hence people step back for a > variety of reasons. > > Sounds like you are playing the game well. > Regards Jane > Ps the podcasts are great thanks > > > > > Jane Warner/Hudson > > 07 46714737 > > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Monday, May 18, 2009 11:14 PM > To: familyvoices at inpress.pledgonline.com > Subject: FV: School Meeting & Thanks from Gina > > Thank you to everyone for your fantastic advice. > > The meeting with the school went well. Just as a recap this was > very much for us to bring some information and ideas to the table > to ensure we were all on the same page about what Inclusion > actually is. > > The principal has done amazingly well in the two weeks since our > last meeting. She has started researching around the topic reading > stuff from Mara Sapon-Shevin (who is speaking at the Family > Advocacy Conference this week). They have booked the teacher who > is the inclusion officer from our school into the Friday session of > this conference (I think I understood that correctly). > > She has acknowledged that her understanding of inclusion was a long > way from what it really means to us and admitted to some > embarrassment around this - I am pretty impressed... this is a > pretty strong willed/strong minded woman who doesn't flip flop, > doesn't embrace change readily - this is significant to her and for > her. She felt that her biggest shift in thinking was our > explanation last meeting that the ultimate goal for Mac would be > able to attend school without the need for a teachers aide because > the curriculum modifications, peer supports, strategies and > technology would meet his needs. He will always need a personal > support person for feeding/toileting but not a baby sitter. This > was her big realisation. > > She knows she is just at the start of the learning, but is enjoying > the learning so far. > > From my perspective this is a very good start to driving some real > shifts in thinking for the school. We are in agreement that the > eventual real goal for them is that ultimately the concept of > inclusion will be invisible, it will just be education for all. > > This is what we hoped to see. We partly picked this school and > principal because they are already in the business of shared > visions, core values etc but also, the principal is a bit of a > fighter for kudos. She now knows how the NSW DET is lagging > behind, just by the amount of information NOT on their website > around inclusive education. The realisation she could be a great > 'showcase' on how to shift the thinking etc sits all very nicely > with her psyche... I told you we don't play fair. > > So once again, thank you everyone for you advice, information and > support. Jill, thanks for the call today, it was very timely and > very useful. Kept us on topic ensured we didn't get caught up in > designing a "Mac Plan" for inclusion but rather identified any Mac > specific stuff can be covered in his soon to be established > Learning Team meeting. > > Regards > Gina > > PS:. Any advice on successful management of Learning Teams (ie when > to hold, who to involve, how regularly eg one full LT every term, > interim parent/teacher/aide every month? I am not sure what is > appropriate there, figure if anyone knows 'best practice... might > as well start there' :-) > > > > > > > > > I am using the Free version of SPAMfighter. > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2119 - Release Date: > 05/17/09 16:58:00 > -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 18 16:24:59 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 19 May 2009 09:24:59 +1000 Subject: FV: School Meeting & Thanks from Gina In-Reply-To: <7s25l8$bdct1n@ipmail05.adl2.internode.on.net> References: <7s25l8$bdcbjq@ipmail05.adl2.internode.on.net> <7s25l8$bdct1n@ipmail05.adl2.internode.on.net> Message-ID: <002f01c9d80f$dd4e3910$97eaab30$@Speed@mamre.org.au> Congratulations Gina - another emerging enlightened educator! Good work!! Inspirational game-play, lady. I'm learning a lot from you. Take care Anita Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 11:14 PM To: familyvoices at inpress.pledgonline.com Subject: FV: School Meeting & Thanks from Gina Thank you to everyone for your fantastic advice. The meeting with the school went well. Just as a recap this was very much for us to bring some information and ideas to the table to ensure we were all on the same page about what Inclusion actually is. The principal has done amazingly well in the two weeks since our last meeting. She has started researching around the topic reading stuff from Mara Sapon-Shevin (who is speaking at the Family Advocacy Conference this week). They have booked the teacher who is the inclusion officer from our school into the Friday session of this conference (I think I understood that correctly). She has acknowledged that her understanding of inclusion was a long way from what it really means to us and admitted to some embarrassment around this - I am pretty impressed... this is a pretty strong willed/strong minded woman who doesn't flip flop, doesn't embrace change readily - this is significant to her and for her. She felt that her biggest shift in thinking was our explanation last meeting that the ultimate goal for Mac would be able to attend school without the need for a teachers aide because the curriculum modifications, peer supports, strategies and technology would meet his needs. He will always need a personal support person for feeding/toileting but not a baby sitter. This was her big realisation. She knows she is just at the start of the learning, but is enjoying the learning so far. >From my perspective this is a very good start to driving some real shifts in thinking for the school. We are in agreement that the eventual real goal for them is that ultimately the concept of inclusion will be invisible, it will just be education for all. This is what we hoped to see. We partly picked this school and principal because they are already in the business of shared visions, core values etc but also, the principal is a bit of a fighter for kudos. She now knows how the NSW DET is lagging behind, just by the amount of information NOT on their website around inclusive education. The realisation she could be a great 'showcase' on how to shift the thinking etc sits all very nicely with her psyche... I told you we don't play fair. So once again, thank you everyone for you advice, information and support. Jill, thanks for the call today, it was very timely and very useful. Kept us on topic ensured we didn't get caught up in designing a "Mac Plan" for inclusion but rather identified any Mac specific stuff can be covered in his soon to be established Learning Team meeting. Regards Gina PS:. Any advice on successful management of Learning Teams (ie when to hold, who to involve, how regularly eg one full LT every term, interim parent/teacher/aide every month? I am not sure what is appropriate there, figure if anyone knows 'best practice... might as well start there' :-) _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. !DSPAM:585,4a115f4c196731492418586! -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Mon May 18 17:07:13 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 19 May 2009 08:07:13 +0800 Subject: FV: What is inclusion? In-Reply-To: <000901c9d6eb$1e8f3490$5bad9db0$@com> References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> <000901c9d6eb$1e8f3490$5bad9db0$@com> Message-ID: <000901c9d815$c3384f10$49a8ed30$@net.au> Hi There, Our youngest son is going to Pinny High now, the reason is because he talked about wanting to be a farmer all through primary school up until year 7, so thought we should put him in among some and they also have a pretty good Ag Course to get him started if that was what he really wanted - as we suspected he has gone off the idea of farming and currently doing a Work Placement for an Electrician which his mum thinks will be veeery handy - hope he stays with this idea. I don't know what the school was like when you were there but it's got a good reputation now and I love the Principal, she has been our backstop should things not have worked out with Dan at his school - always nice to have options. Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Jo - I just wanted to I LOVED the story - thanks. I'm heading for the fridge for the chardy to celebrate alongside you. Enjoy this precious moment. Anita :) PS - I did grade 4 in Pinjarra Primary school (I won't admit to what year...) -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Everyone, It is 5pm West Aussie time and I have been sitting here with a loooovely glass of Cab/Sav catching up on the conversation on FV learning from one of my favourite sources. I am feeling pleasantly tired after being away to a Velor Microboard Weekend at Fairbridge (just north of Pinjarra) with another amazing group of people from all over the state learning more about inclusion and how to invite others to be an integral part of our sons life. While I was learning this stuff Dan was out having fun on the flying fox, abseiling, bush walking etc supported by new friends..... Would like to share this story from the weekend, Dan and a young man, Jack connected with one another on Saturday, I only discovered the connection this morning when Jack walked by at breakfast and I saw Dan's arm shoot up to give him a 'high five', Jack stopped, said good morning, how are you mate, had a bit more of a chat and went off to have brekky. The abseiling was happening after breakfast and after some discussion with the Coordinator she approached Jack to ask if he would take Dan abseiling which he readily agreed to. When lunch time came around, Dan arrived back at the hall with Steve, minus Jack - I was wondering if everything went ok and decided to follow up with him when I could. 15 minutes later he came in and sat down, I thanked him for helping Dan out and he said "it's me that will be thanking Dan", he explained that he had never abseiled before so prior to taking Dan up he did a dummy run on his own, then he went up and down with Dan. After everyone had had their turn the instructor offered Jack a weekend job, Jack said he didn't know much about abseiling and the response was "if you can support someone the way you did with Dan, talking to him all the way up and down, helping him out where he needed, you know everything you need to know". Jack was stoked (he's 16) and I was in awe of him being so appreciative of Dan who helped him get the job. One day I'll stop being surprised but right now I still get caught out with how there are others who are so appreciative of our kids. Just wanted to share a warm and fuzzy - they help me keep going with the other hard slog stuff we have to face - thank goodness for these little gems. I have some education stuff happening (negative) but don't want to go into it just now after my enjoyable weekend so will ask for some comments at another time when I'm ready to tackle it.......wish it could be never! Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 2:39 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? HI Gina Just been skyping with Anita. Wow is that scary I think the rule should be only head for camera. I have also just gone to itunes and downloaded away the podcasts?? What are they? Is anyone interested in skypeing? Cheers Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 1:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don' t go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Mon May 18 17:15:31 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 19 May 2009 08:15:31 +0800 Subject: FV: What is inclusion? In-Reply-To: <7rkm5b$agskji@ipmail01.adl6.internode.on.net> References: <000a01c9d6eb$63cc6cd0$2b654670$@com> <7rkm5b$agskji@ipmail01.adl6.internode.on.net> Message-ID: <000a01c9d816$ec591130$c50b3390$@net.au> Hi Gina, I have been reading all this fantastic stuff you and your hubby are doing, not just your knowledge but the fact that you know one another sooo well and are able to advocate strongly (don't feel sorry for them, give em an inch they'll take a mile), my heart sings for Mac and the future he has ahead of him because of you two. The stories bring back memories of Dad and myself going in having these conversations, we are nearly out of it now, though after the Microboard weekend away I've learnt there may be a possibility he can go to Uni and reading the conversations I am feeling more confident about going on - thanks. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:39 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Jo, great story to share - how fantastic Thanks Anita, not stressing about the meeting, we (well the school more so than us) are "in the learning pit" from the pit can come great things. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 10:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Good luck with the meeting tomorrow, Gina. We're with you in spirit! Best wishes Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 9:10 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Meg as always. I am not convinced there is anything too sinister at this stage. I think they are feeling pressured and overwhelmed by their own shortcomings so are essentially deflecting some of that back to us (unsuccessfully). It hasn't helped that Mac's very experienced Kindy teacher (and DeputyPrincipal) has been replaced for the next 2 terms by a fairly young teacher (who is lovely) but as the DET seconded Mac's teacher to educate the district about the Best Start testing etc I think that has made things a little more difficult and meant any continuity we had in teaching was lost and exacerbated by their mucking around with changing aides around so that continuity was lost too. Thanks for those great words, I will paraphrase some of those concepts in our meeting with them tomorrow. Regards Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina Only you can ascertain if the question from the school was sinister in intention or just another question in their search for what to do. I think it is a perfectly legitimate question for a school to ask to establish the ground work of mutual expectations. They would get a different answer from different parents like "just love him" through to "!00% total hands on engagement all day every day". Every parent and every school is different in their expectations of schools, teachers, families and inclusive practice and the school establishing the lay of the land in relation to your expectations is very important for an open, healthy happy relationship between the two of you into the future. Personally I believe that Mac has the right to be as bored and disengaged as every other child in the class in the ebb and flow of a typical school day. I think the real question is engaged in what???? Joscelyn does not have the capacity to be engaged in curriculum all the time. If she experiences a particularly taxing thinking task she needs down time to mentally recover for the next one. If this is not respected she will typically have a major meltdown which involved lots of screaming and flinging of limbs in her early school career. High school is brilliant in this respect as the movement, packing up and settling down from class to class builds in these breaks perfectly in a legitimate way. Some parents are so in love with the early years are the most important year's philosophy that their children really don't get to enjoy a childhood because every moment is programmed within an inch of existence for outcomes, outcomes, outcomes. This is usually the argument for a fulltime aide which usually leave the child no time for the hum drum of what happens in the waiting time as an adult is always present impeding typical child interactions. I know that waiting is too much of the time at school but a hell of a lot of learning goes on in waiting time such as the sniggering of seeing the teacher undies, who is going to play catch and kiss at lunch and the bands in JJJ's hottest 100. This is how children learn to be their age and you don't learn to be 20 before you have been 10 or 15. This side of school is also engagement. Some students need to have a bed set up at the back of the room so they can have a little kip when they get tired, some kids need to sing or make noise, some kids need to pace, some need to draw and doodle. None of this means that the students aren't engaged it just respects the way they interact with the world. Typical classroom teachers don't know this until they get to know the child and asking questions is a good way initially. Just this week the TAFE teachers contacted us as they thought Jos wasn't engaged in the Child Studies class she is doing as she sits with her head down often drawing as they teach. We assured them that, TAFE is the highlight of her week and she tells us snippets of her time at TAFE with catching the town bus independently with her friends, and the canteen being the best bits..surely better than OH+S and Legislation. Once they knew she was OK and we were OK they were OK too. The bottom line for me is that every lesson plan must incorporate Macs learning needs as outlined in the IEP or planning meetings. These learning needs may be very diverse; social, physical, intellectual, communicative etc, etc. He is thought about in every lesson however there is a mixture of outcomes for him depending on the mood of the day. I know this isn't prescriptive however no two days at school are the same for any child and Mac's education needs to be as fluid as the other kids or it will set him apart. Only you can know if you think the school is intentionally leaving Mac out ....... usually it's mothers intuition. Rest assured even when our daughters educational experience has been very ordinary it has been better than any alternative. Cheers, meg _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac J Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Mon May 18 18:09:34 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 19 May 2009 11:09:34 +1000 Subject: FV: What is inclusion? In-Reply-To: <000a01c9d816$ec591130$c50b3390$@net.au> Message-ID: <7s25l8$bdms60@ipmail05.adl2.internode.on.net> Thanks Jo I try not to take pity and will remember to stay alert to the 'nigglers' who will try just as hard to undermine what we do because it scares them. Sometimes in the meeting when Shawn inflates his chest, crosses his arms, raises one eyebrow and asks a very 'enquiring, pointed' question I feel like he is channeling your Dad (without the virtual baseball bat at this stage). Oh the other thing we have been asked to do in Term 3 is to come in a few times and talk to the teachers about Mac, the history, the future etc. This will be a great opportunity to show what life for Mac could look like when he is 25yo, when he is at high school etc (all questions that have been raised in recent times by some teachers now they feel confident to actually think about him). I will have to revisit my Fam.Advocacy notes form a few years ago to revisit the two distinct paths of inclusion and segregation because I think that would be a great visual journey to show, eg as 18yo boys Ethan coming and taking him to the beach in Mac's modded car, Harry helping develop computer programs to tweak the GPS virtual fencing for managing the livestock on Mac's farm or Mac's robotic augmented mobility device being so successful he would be planning a trip to Tuscany (Mum and Dad might go on that one I think) to visit Danny (the developer we are working with) to start working on better stair climbing powered mobility options OR, the alternative, Mac being collected by Community Transport and delivered to his day program for the first year of 50 year projection of his day programmed life. Hmmm, maybe that is too scary to deliver. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 19 May 2009 10:16 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, I have been reading all this fantastic stuff you and your hubby are doing, not just your knowledge but the fact that you know one another sooo well and are able to advocate strongly (don't feel sorry for them, give em an inch they'll take a mile), my heart sings for Mac and the future he has ahead of him because of you two. The stories bring back memories of Dad and myself going in having these conversations, we are nearly out of it now, though after the Microboard weekend away I've learnt there may be a possibility he can go to Uni and reading the conversations I am feeling more confident about going on - thanks. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:39 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Jo, great story to share - how fantastic Thanks Anita, not stressing about the meeting, we (well the school more so than us) are "in the learning pit" from the pit can come great things. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 10:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Good luck with the meeting tomorrow, Gina. We're with you in spirit! Best wishes Anita From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 9:10 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Meg as always. I am not convinced there is anything too sinister at this stage. I think they are feeling pressured and overwhelmed by their own shortcomings so are essentially deflecting some of that back to us (unsuccessfully). It hasn't helped that Mac's very experienced Kindy teacher (and DeputyPrincipal) has been replaced for the next 2 terms by a fairly young teacher (who is lovely) but as the DET seconded Mac's teacher to educate the district about the Best Start testing etc I think that has made things a little more difficult and meant any continuity we had in teaching was lost and exacerbated by their mucking around with changing aides around so that continuity was lost too. Thanks for those great words, I will paraphrase some of those concepts in our meeting with them tomorrow. Regards Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina Only you can ascertain if the question from the school was sinister in intention or just another question in their search for what to do. I think it is a perfectly legitimate question for a school to ask to establish the ground work of mutual expectations. They would get a different answer from different parents like "just love him" through to "!00% total hands on engagement all day every day". Every parent and every school is different in their expectations of schools, teachers, families and inclusive practice and the school establishing the lay of the land in relation to your expectations is very important for an open, healthy happy relationship between the two of you into the future. Personally I believe that Mac has the right to be as bored and disengaged as every other child in the class in the ebb and flow of a typical school day. I think the real question is engaged in what???? Joscelyn does not have the capacity to be engaged in curriculum all the time. If she experiences a particularly taxing thinking task she needs down time to mentally recover for the next one. If this is not respected she will typically have a major meltdown which involved lots of screaming and flinging of limbs in her early school career. High school is brilliant in this respect as the movement, packing up and settling down from class to class builds in these breaks perfectly in a legitimate way. Some parents are so in love with the early years are the most important year's philosophy that their children really don't get to enjoy a childhood because every moment is programmed within an inch of existence for outcomes, outcomes, outcomes. This is usually the argument for a fulltime aide which usually leave the child no time for the hum drum of what happens in the waiting time as an adult is always present impeding typical child interactions. I know that waiting is too much of the time at school but a hell of a lot of learning goes on in waiting time such as the sniggering of seeing the teacher undies, who is going to play catch and kiss at lunch and the bands in JJJ's hottest 100. This is how children learn to be their age and you don't learn to be 20 before you have been 10 or 15. This side of school is also engagement. Some students need to have a bed set up at the back of the room so they can have a little kip when they get tired, some kids need to sing or make noise, some kids need to pace, some need to draw and doodle. None of this means that the students aren't engaged it just respects the way they interact with the world. Typical classroom teachers don't know this until they get to know the child and asking questions is a good way initially. Just this week the TAFE teachers contacted us as they thought Jos wasn't engaged in the Child Studies class she is doing as she sits with her head down often drawing as they teach. We assured them that, TAFE is the highlight of her week and she tells us snippets of her time at TAFE with catching the town bus independently with her friends, and the canteen being the best bits..surely better than OH+S and Legislation. Once they knew she was OK and we were OK they were OK too. The bottom line for me is that every lesson plan must incorporate Macs learning needs as outlined in the IEP or planning meetings. These learning needs may be very diverse; social, physical, intellectual, communicative etc, etc. He is thought about in every lesson however there is a mixture of outcomes for him depending on the mood of the day. I know this isn't prescriptive however no two days at school are the same for any child and Mac's education needs to be as fluid as the other kids or it will set him apart. Only you can know if you think the school is intentionally leaving Mac out ....... usually it's mothers intuition. Rest assured even when our daughters educational experience has been very ordinary it has been better than any alternative. Cheers, meg _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. The Professional version does not have this message. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Mon May 18 21:10:02 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 19 May 2009 12:10:02 +0800 Subject: FV: What is inclusion? In-Reply-To: References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net><132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> Message-ID: <001001c9d837$aedab720$0c902560$@net.au> Hey There Meg, I've been formally developing Dan's Circle of Friends for the past two years to ensure people will stay connected with Dan beyond school, some of these gatherings have been facilitated by my friends Susan & Ewa, sounds official I know but was done with a lot of fun and we found the young people loved it and always ask us when the next one will be on - the way we approach it also helps them to think about their future, who will be in it, what will it look like and so on. I asked Sue and Ewa to do this for me because I've always been in the young people's lives - living 500 metres from the school has meant the kids have always just dropped in to visit, walked Dan home after school etc and they all knew me as Dan's mum (as should be the case) and I wanted to keep it that way which is why I asked Sue and Ewa to take on a more specific role to get people thinking about how they can continue to be in his life when they move off to other schools/TAFE/work.... I have also just joined Microboards (met the families at Fairbridge over the weekend) who are families committed to providing inclusive lives around their family member. Dan's Board members have a relationship with him and will work specifically to develop all sorts of stuff around him - what does he like to do, who with, where he will live - this will happen with Daniel's input at every meeting and in between. Because they have a relationship with him, each member will have different experiences and knowledge about him (very helpful for Daniel who can't tell us in words), they may/will see things in Dan that I or someone else wouldn't which helps to bring information to the Board, who can then come up with ideas on how to achieve whatever it is they have seen Dan communicate to them - bungee jumper (heaven forbid), surfer, truck driver and so on. Oh boy, this is hard writing conversations so if it doesn't make sense please let me know and I'll try to be clearer. I like this idea because it's not me coming up with all the idea's and having to do all the ground work all the time. I have been wonderfully surprised at people wanting to jump on board with this. Dan's friends from school range from 15-17 so they are a little young to be on a Microboard, however we intend to invite them in to have input with Dan - very helpful for the oldies to understand things from a teens perspective. I am applying for Post School Options now and have been talking about after school life for the past two years. Some of the ideas of what Dan's friends see him as 'being' have come out during the facilitated sessions - Dan is a postman, teacher's aide, dog walker, social networker and one young man said he is Rich and will go and live on an island somewhere with his friends (the painting was in bright yellow with dollar signs everywhere, a smiling Daniel with palm trees around him) - I don't know about Dan but I reckon that would suit me! The school stuff is about another new Principal trying to put his stamp on things.....I should be used to it by now but guess it just wears me down a bit and takes a lot of energy and time to build up the new relationship...sigh, violins... Reading the conversation about Gina's experiences and others advice is great and I think most of it can be applied across the board with many facets of our children's lives.....it's certainly giving me the impetus to think about further education for Dan so all coming just at the right time. Ok, now need to go and tiz myself up for the meeting with the Principal Have a beaut day Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 4:53 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Fantastic Jo.....we too are a product of our upbringing and are learning along the way in relation to the reciprocal relationship that is to be had with our loved ones. I know I shouldn't be surprised when a really lovely encounter happens but I am. I cherish the thought that these encounters will be so frequent that they become the norm. I hope the school stuff isn't too terrible. Is some sort of transition from school to post school life, talk happened yet ? What are the options being presented for Dan ? Do you have support in thinking of and enacting a future for him that will provide a good life in the community? Megs -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Everyone, It is 5pm West Aussie time and I have been sitting here with a loooovely glass of Cab/Sav catching up on the conversation on FV learning from one of my favourite sources. I am feeling pleasantly tired after being away to a Velor Microboard Weekend at Fairbridge (just north of Pinjarra) with another amazing group of people from all over the state learning more about inclusion and how to invite others to be an integral part of our sons life. While I was learning this stuff Dan was out having fun on the flying fox, abseiling, bush walking etc supported by new friends..... Would like to share this story from the weekend, Dan and a young man, Jack connected with one another on Saturday, I only discovered the connection this morning when Jack walked by at breakfast and I saw Dan's arm shoot up to give him a 'high five', Jack stopped, said good morning, how are you mate, had a bit more of a chat and went off to have brekky. The abseiling was happening after breakfast and after some discussion with the Coordinator she approached Jack to ask if he would take Dan abseiling which he readily agreed to. When lunch time came around, Dan arrived back at the hall with Steve, minus Jack - I was wondering if everything went ok and decided to follow up with him when I could. 15 minutes later he came in and sat down, I thanked him for helping Dan out and he said "it's me that will be thanking Dan", he explained that he had never abseiled before so prior to taking Dan up he did a dummy run on his own, then he went up and down with Dan. After everyone had had their turn the instructor offered Jack a weekend job, Jack said he didn't know much about abseiling and the response was "if you can support someone the way you did with Dan, talking to him all the way up and down, helping him out where he needed, you know everything you need to know". Jack was stoked (he's 16) and I was in awe of him being so appreciative of Dan who helped him get the job. One day I'll stop being surprised but right now I still get caught out with how there are others who are so appreciative of our kids. Just wanted to share a warm and fuzzy - they help me keep going with the other hard slog stuff we have to face - thank goodness for these little gems. I have some education stuff happening (negative) but don't want to go into it just now after my enjoyable weekend so will ask for some comments at another time when I'm ready to tackle it.......wish it could be never! Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 2:39 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? HI Gina Just been skyping with Anita. Wow is that scary I think the rule should be only head for camera. I have also just gone to itunes and downloaded away the podcasts?? What are they? Is anyone interested in skypeing? Cheers Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 1:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don' t go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Mon May 18 22:58:01 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 19 May 2009 13:58:01 +0800 Subject: FV: What is inclusion? In-Reply-To: <778E10A5DFD045E18FE0150A4BCB51E1@dell91> References: <006a01c9d5f7$97de0c80$c79a2580$@com><7rkm5b$aggkc2@ipmail01.adl6.internode.on.net> <41DF3C0BC2DA4951BD79543C99B70FED@SWEENEYDESKTOP> <778E10A5DFD045E18FE0150A4BCB51E1@dell91> Message-ID: <001d01c9d846$c4cb2dd0$4e618970$@net.au> Hey Jane, I can sooo relate to being too hard on oneself and I try not to beat myself up over it too. I keep coming back to the fact that as with life and our friends it all ebbs and flows, last weekend my sister was invited to 4 parties all on the one night ranging from a 70th birthday to a Housewarming party. As she said, she hadn't gone out for months and it all falls on one night. I guess when those things happen for our kids we get all thingy about it (not being connected with friends for a week or two) because we are the ones who are consciously thinking about it and at times orchestrating the connections on their behalf - my sister commenting on the influx of parties after months of having a dry spell reminded me that it's ok, Dan is ok and it's just life. >From one mum being kind to herself to another. Love Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 19 May 2009 5:21 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? HI Meg and gang Meg thank you! I got home last night late, work is off the planet at the moment (Audit prep so that people can have better lives. ??????????HMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM) as I said won't go there. Any way printed off your words so I could read them at the right time and space. PRIVATE & PUBLIC You put it well as I so relate to the bra thing, must be genetic as Sarah does the same thing when she walks through the door as her mother & Meg. I too have been lucky to have a teenager in the house, I have downloaded all his music as well. Funny though lots of the music comes from our time. Must admit though no Linda R. He has left the scene now to spread his wings which I am very pleased about but i do miss him terrible as does I am sure Sarah. You have given me a injection to make the connection with young people again. I suppose it's the asking stuff that sometimes makes it hard but Jo after reading your wonderful story there is another push. I think sometimes I bash myself up a bit and the connections are happening but I think one that they and aren't and two not enough. I have to keep brining myself back to everyone else ie Bill sat on the computer with his head phones on for 4 years so why does Sarah have to be any different. In saying that it is different Bill had mates in and out. All good stuff to work on. Will go now off to work, have to say struggling a bit working for a organization who say all the right things not sure are so good at the doing. Will see!! Take care all have a great day. Love Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, May 18, 2009 8:04 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane and everyone else I had some thoughts in relation to Sarah's ipod and content. I know in past emails the discussion in relation to age appropriate interests has been a feature. I'm using headings again to keep me focused and hopefully make my ramblings easier to follow. I find all of the issues raised are complex on many levels and how to tackle them is multi faceted, forgive me. PRIVATE AND PUBLIC As our young people get older, as we have witnessed in Canada, adult expectations become a very real part of enacting an included life. We need to have faith ourselves that our people can develop adult identities within an adult framework. Some of our family members will need more assistance with this than others as in essence others are often making choices on their behalf. We need to be mindful of the image and message we surround our person with in the wider community, in a crude way I'll call it marketing. If the marketing suggests that our 18 year old likes infant music, wears bibs, is referred to in baby nic names or any childish stuff then this reinforces the general public's unconscious view that they are a child forever. We know that children don't have jobs, a home of their own a sexuality etc. So the expectation that is set up denies our loved ones all sorts of adult opportunities that we are trying really hard to get going. Mixed messages are being sent about who this person really is which naturally confuses people. In respect of the person that may love some of these things, a way to deal with this as people get older is to have the public face and the private face. In reality we all do this. I hate wearing a bra and as soon as I'm in the door off it comes and is hung on the nearest doorknob.....hence I'll never run a B+B. Equally Jos likes some childish things however we ensure she enjoys these in the privacy of her own home in the arms of her loved ones that don't degrade her for this enjoyment. In public we make a concerted effort as a family to be very conscious of marketing an adult persona for her. We talk with her about the difference between home and out and she appreciates the difference, she knows that her likes are not being denied they are appropriate to the environment. She wants to be treated as an adult and is learning to understand that. That said we are looking forward to her having nieces and nephews that share her enthusiasm for digging holes at the beach. We frequently accost unsuspecting children facilitating their sandcastle building with Joscelyn's well developed prowess as it is acceptable to dig as an adult with children but not alone. We could get into the whole "buying into the publics acceptability not being what it should" blah, blah, blah, however I'm not prepared to go to work and shop braless so expecting Jos, who is much more vulnerable, to not conform the best she can to social age appropriate norms would be very hypocritical. MOVING ALONG WITH AGE APPROPRIATE STUFF For some of us I'd have to ask who exactly is stuck in the age rut. I have been fortunate having Jos sandwiched closely between two children who have dragged me along with their changing likes and interests thus affording Jos the opportunity to experience this progression too. Months turn into years and years turn into decades and we are still dishing out the same old stuff simply cause time has got away and out young ones cant request a change on their own behalf. Early childhood stuff is very well marketed and easily found for parents whereas teenage or adult stuff is more diverse and there-fore difficult to narrow down as far as popularity. I believe the general rules of what is popular for littlies applies for all other ages. ie any record that is very popular or a hit chances are that people with disabilities will like it too. Some of the attachment may be comfort and familiarity so introducing different stuff over time in measured doses it the way to go. It might not be your gig but tuning the radio to JJJ or the local top 40 station while in the car may bring some pleasant results for you as well as your family member. My children have helped me move on from Linda Ronstadt that's for sure. I did find folk groups such as Peter, Paul and Mary, the Seekers and Carpenters a bridge for Jos from children's music. Not groovy these days but a step towards an adult sound. Now she loves the more upbeat top 40 stuff and god forbid, high school musical soundtracks however I have a friend who's son loves death metal.....as individual as they are. My advice is get favourite playlists from any young people you know, download away, and play, play, play. You'll soon know what your person loves. Dressing takes the eye of someone their own age so enlisting a fashion recruit is vital. I have approached Daniels girl school friends who have jumped at the chance to 'STYLE' Jos and Jos was much happier shopping with them than me. I still had to offer advice in relation to manageability and practicality that the girls took on board. Just be ready with the credit card. There is heaps more to this issue and it's not trivial, the foundation starts with us taking on the idea that our family member is older and capable of developing into adulthood and enjoying adult things, this mindset will allow opportunities to flourish. Love to all Megs P.S. House on market, Todd leaves in 3 weeks, freaking out..........YES! -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 10:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. Q/Which manual or directions do you think are the simplest for programming? Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Can I download a dvd to ipod direct or does everything have to go thru itunes? Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? Many thanks Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, May 16, 2009 8:17 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Oh my. 2-10mins We have been having a nice giggle about the 100% too. I like your awake with a pulse comment, thanks I will keep that in mind. And yes, thankfully I think children learn 'in spite' of everything. Oh yes, while I completely get the industrial background to education and the grouping notions I have also had it used 'against me' - very passively of course. They have tried the "grouped by age is merely a convenience" thing with me - but that was when they were thinking Mac could stay in Kindergarten for his entire 7 years at primary (ugh). because, among other things it would make it easier for the wheelchair access and accessible toilet access if he stayed in the same room every year Thankfully I was a little prepared for the comment, had a gut feeling it would come up so deflected it by highlighting the 9-3pm timing is also a convenience thing. I suggested I am all for learning centres where they are open from at least 7am till 10pm without all those annoying 12 weeks holidays they throw in, funnily enough the teachers/schools don't seem as interested in that as me. In fact Mac's best learning time is later in the evening (I think this is true of many stroke rehab and traumatic brain injured people) - you don't even see rehab people working at the optimal times and their job is rehab. I recently read A S Neill's A Dominie's Log (circa 1916) fab insight into the original thinkings of Mr Neill long before he established Summerhill School. Now trying to get my hands on some of his other books to see when and how he changed his thinking and, in contrast, when and how he stuck to his guns on other issues. Very interesting man. Gives me a different insight into some of the history etc to the 'teacher designed schools' concept our school follows. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 5:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Students are in "zone of proximal development" ~2-10 minutes per day. That does not mean they are not learning for 6hrs 20 minutes, it just means the subject matter can either too easy and they are practicing something they already know (or are bored out of their minds), or it is too hard and thus frustrated or they can be waiting for something to happen (most time spent doing this daily) ..in line, for books to get out, for class to "settle" etc. Obviously those that don't "wait" well, don't cope well in school environments. Being in "the zone" is the only place where you actually "progress", at least optimally. This is important to us all as parents because there is a lot of mythology about grouped/public education or what we should more accurately refer to as industrial-complex education because it was invented during the industrial revolution as a sort of social sorting machine. Children were "sorted and graded" (thus the "gade levels we still have) and those not "making the grade" were "sorted" as in a factory and failed (aka rejected and/or recycled). We have stopped the practice of "failing" - mostly, although it is a latent piece of the system still used to determine "special education placement" and later on sorting who will go onto University and even what subject they will be allowed to enter (e.g. TEE entrance exams). Until the 70's we had in WA a sorting at year 10 and actually called it "leaving". (aka .. you are not going to be a professional so you are leaving!) (See the history. It is fascinating). Whilst it is true that kids learn in such environments where the early constructional assumptions are long forgotten, it is not necessarily the structure that "causes" such learning. For instance, youngsters who live on remote cattle stations and receive no grouped instruction for their whole primary career, only receive tuition from parents and school of the air teachers- perform as well or superior both socially and academically to students in high school when they come in to boarding schools. Thus the "structure" of the 100 year old sorting machine experiment in age-grouped instruction is not necessarily an ideal or even necessary one. It is however "the main game in town" and where all kids 'hang out" so it is a critical place for inclusion. All of this is also not to say there are not some exceptional and enlightening teachers and inclusive schools, but by the very definition of quality, they are rare. Sorry. It made me chuckle that someone would claim students learning 100% of the time and I couldn't help responding. In fact, s/he is correct. If you have a pulse and you are awake, you ARE learning. (My IQ test). It is just that we have not quite discerned if this is a matter of by luck, design or the amazing fact that kids learn in spite of almost everything we do. (Thank goodness!) Kindest thoughts. Darrell Darrell Wills BA/MEd Project Director PLEDG Projects pledg at bigpond.com From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 2:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Darrell OK, fess up, what percentage? I shudder to think. I'll just stick with "the same as the other kids" and since they are so confident the others are engaged 100% of the time, that will certainly auger will for Mister Mac :-) Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 16 May 2009 1:38 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, 110% I say. If you really want to get scared though, read some actual research on engaged time of typical kids in schools (any guesses out there?) In the same vein of sic humour have a guess what kids spend their MOST time in school doing. Kindest thoughts. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 15 May 2009 10:10 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi All Quick question - I have been asked by the school to identify what proportion of Mac's day should be 'meaningful learning' (my words, can't remember theirs). When I asked them what percentage the other children are 'engaged' in learning they reckoned it was 100% of the time. I was surprised by that answer as honestly, I don't believe any child would be engaged in 'real learning' 100% of the time no matter how good the school (but happy to be corrected if this is the case). However, I don't think Mac should have a percentage figure different to any child. Sure his learning will look different but he shouldn't really be 'cast aside' at any time of the day - I think to give them a figure less than the other children reinforces he is a devalued member of the community in their eyes. Is this being too pushy? I also wonder. should I really have 'brick wall dents in my head this early"?. today I left school in disgust today as they had a lady (on a fundraising venture) talking to assembly about 'how terrible your life is if you are in a wheelchair, how awful it would be' and asking "what kind of sickness would you have to be in a wheelchair". I was pretty furious - but figured I should just leave before I exploded - sigh. I will write to the relevant service club and explain nicely how they can pick their words and explanations better - I know they are well meaning, just ignorant, so might be able to educate them if I write the letter well. I will remind the school they need to be respectful of "ALL" students. There is Mac, one Dad and two grandparents in wheelchairs at this school, I am pretty sure their lives aren't awful - ugh. Catherine, looking forward to the FA conference next weekend - as you can see I am in need of all the help and info on offer. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 9:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo, Good to hear you too! I have been reading the copious amounts of info but I am always really short of time so don't get too much time to reply. I am inspired by all of the conversation that has been taking place. Hope all is well with you. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 6 May 2009 8:06 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Helen, It's lovely to hear from you. Yes, diddo for us too about Dan - they're good aren't they! Wish FV was around when I was starting out like Gina is now. It's so powerful to have all this knowledge and discussion. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 12:31 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Gina, Just wanted to let you know that Shari is severely disabled also and that is what we were told too. It can be done and it has been done and he is not the first. Cheers Helen Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 5 May 2009 2:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Jaquie Ha ha, I don't know whether the school really want to be up for this but as they are a Teacher Designed School with a strong shared vision and set of core values to which they adhere they have pretty much made the bed they now have to sleep in otherwise they don't meet their shared vision of respect for all students, among other things. There is still that underlying threat they might "have to be big enough to say, we just can't do this" (teaching Mac that is). It is hard because they have been told over and over by DET that they consider Mac to be the most severely disabled person every to have been mainstreamed. I don't know if it is true but certainly don't want to get into a "my kid 'out craps' your kid" type of discussion. I have assured them once they have the 'a-ha' moment it will be far less scary, and really exciting. They will realize it actually isn't as hard as they think it currently is. It was interesting watching the Dep.Principal in the meeting yesterday. I was suggesting an example of one way to set and meet a goal for Mac around communication. I was explaining an idea if we were prepared to add 50 seconds to the rollcall process and encourage Mac to make a verbal response "yar" on hearing his name that it would be a great outcome. Some of the kids might like to model saying 'yar' for him to help encourage him. One might be on hand to touch his elbow or prompt him when his name is called to answer and after an agreed time they could help him answer with a speech output device. Not only is it able to be turned into an 'assessable task' it is also something they do every day without fail. The DP was just sitting there gobsmacked it could be that simple, that he had never considered rollcall or something that isn't normally a 'key learning' opportunity might be able to be tweaked that way. His thinking is already changing. I am building up reasonably good relationships with the other stage 1 teachers so they get to know me, so as much as I might not be prepared to waiver on stuff around this, they will (hopefully) learn I am not a complete pain in the butt. At an AFL sports day today which I helped out with madly running around with all the kids and including Mac in most of the activities I found out that the way to many a teachers heart is through coffee. Glad they are cheap when it comes to bribery and corruption. I think red wine would probably do even better. Thanks Caroline for those headings - I like them a lot. Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1532 of my spam emails to date. The Professional version does not have this message. __________ NOD32 4052 (20090504) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com __________ NOD32 4054 (20090505) Information __________ This message was checked by NOD32 antivirus system. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1576 of my spam emails to date. The Professional version does not have this message. __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4080 (20090515) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1586 of my spam emails to date. 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Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2119 - Release Date: 05/17/09 16:58:00 From familyvoices at inpress.pledgonline.com Tue May 19 17:10:02 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 20 May 2009 08:10:02 +0800 Subject: FV: What is inclusion? In-Reply-To: References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> Message-ID: <000001c9d8df$527b51d0$f771f570$@net.au> Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Wed May 20 02:33:52 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 20 May 2009 19:33:52 +1000 Subject: FV: What is inclusion? In-Reply-To: <001001c9d837$aedab720$0c902560$@net.au> References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net><132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> <001001c9d837$aedab720$0c902560$@net.au> Message-ID: Jo, Can you explain the difference between micro boards and circles of support? Is one more formal than the other? We haven't had the need to establish this type of thing yet as informal networking, strategic thinking and our connection with kids has been enough however with moving it may become necessary to be more organised. I'm interested in the different set ups? We are hopeful it may rain !!!!! Megs PS meeting with a possible new school principal on the South Coast (Vincentia NSW) on Friday morning and looking at real estate on the weekend. Eldest son home from Europe in 1 week, elderly dog (16) still alive, 2 repeat inspections of our current home tomorrow ...REMINDER TO SELF......all bras off door knobs !! -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 19 May 2009 2:10 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Meg, I've been formally developing Dan's Circle of Friends for the past two years to ensure people will stay connected with Dan beyond school, some of these gatherings have been facilitated by my friends Susan & Ewa, sounds official I know but was done with a lot of fun and we found the young people loved it and always ask us when the next one will be on - the way we approach it also helps them to think about their future, who will be in it, what will it look like and so on. I asked Sue and Ewa to do this for me because I've always been in the young people's lives - living 500 metres from the school has meant the kids have always just dropped in to visit, walked Dan home after school etc and they all knew me as Dan's mum (as should be the case) and I wanted to keep it that way which is why I asked Sue and Ewa to take on a more specific role to get people thinking about how they can continue to be in his life when they move off to other schools/TAFE/work.... I have also just joined Microboards (met the families at Fairbridge over the weekend) who are families committed to providing inclusive lives around their family member. Dan's Board members have a relationship with him and will work specifically to develop all sorts of stuff around him - what does he like to do, who with, where he will live - this will happen with Daniel's input at every meeting and in between. Because they have a relationship with him, each member will have different experiences and knowledge about him (very helpful for Daniel who can't tell us in words), they may/will see things in Dan that I or someone else wouldn't which helps to bring information to the Board, who can then come up with ideas on how to achieve whatever it is they have seen Dan communicate to them - bungee jumper (heaven forbid), surfer, truck driver and so on. Oh boy, this is hard writing conversations so if it doesn't make sense please let me know and I'll try to be clearer. I like this idea because it's not me coming up with all the idea's and having to do all the ground work all the time. I have been wonderfully surprised at people wanting to jump on board with this. Dan's friends from school range from 15-17 so they are a little young to be on a Microboard, however we intend to invite them in to have input with Dan - very helpful for the oldies to understand things from a teens perspective. I am applying for Post School Options now and have been talking about after school life for the past two years. Some of the ideas of what Dan's friends see him as 'being' have come out during the facilitated sessions - Dan is a postman, teacher's aide, dog walker, social networker and one young man said he is Rich and will go and live on an island somewhere with his friends (the painting was in bright yellow with dollar signs everywhere, a smiling Daniel with palm trees around him) - I don't know about Dan but I reckon that would suit me! The school stuff is about another new Principal trying to put his stamp on things.....I should be used to it by now but guess it just wears me down a bit and takes a lot of energy and time to build up the new relationship...sigh, violins... Reading the conversation about Gina's experiences and others advice is great and I think most of it can be applied across the board with many facets of our children's lives.....it's certainly giving me the impetus to think about further education for Dan so all coming just at the right time. Ok, now need to go and tiz myself up for the meeting with the Principal Have a beaut day Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 4:53 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Fantastic Jo.....we too are a product of our upbringing and are learning along the way in relation to the reciprocal relationship that is to be had with our loved ones. I know I shouldn't be surprised when a really lovely encounter happens but I am. I cherish the thought that these encounters will be so frequent that they become the norm. I hope the school stuff isn't too terrible. Is some sort of transition from school to post school life, talk happened yet ? What are the options being presented for Dan ? Do you have support in thinking of and enacting a future for him that will provide a good life in the community? Megs -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Everyone, It is 5pm West Aussie time and I have been sitting here with a loooovely glass of Cab/Sav catching up on the conversation on FV learning from one of my favourite sources. I am feeling pleasantly tired after being away to a Velor Microboard Weekend at Fairbridge (just north of Pinjarra) with another amazing group of people from all over the state learning more about inclusion and how to invite others to be an integral part of our sons life. While I was learning this stuff Dan was out having fun on the flying fox, abseiling, bush walking etc supported by new friends..... Would like to share this story from the weekend, Dan and a young man, Jack connected with one another on Saturday, I only discovered the connection this morning when Jack walked by at breakfast and I saw Dan's arm shoot up to give him a 'high five', Jack stopped, said good morning, how are you mate, had a bit more of a chat and went off to have brekky. The abseiling was happening after breakfast and after some discussion with the Coordinator she approached Jack to ask if he would take Dan abseiling which he readily agreed to. When lunch time came around, Dan arrived back at the hall with Steve, minus Jack - I was wondering if everything went ok and decided to follow up with him when I could. 15 minutes later he came in and sat down, I thanked him for helping Dan out and he said "it's me that will be thanking Dan", he explained that he had never abseiled before so prior to taking Dan up he did a dummy run on his own, then he went up and down with Dan. After everyone had had their turn the instructor offered Jack a weekend job, Jack said he didn't know much about abseiling and the response was "if you can support someone the way you did with Dan, talking to him all the way up and down, helping him out where he needed, you know everything you need to know". Jack was stoked (he's 16) and I was in awe of him being so appreciative of Dan who helped him get the job. One day I'll stop being surprised but right now I still get caught out with how there are others who are so appreciative of our kids. Just wanted to share a warm and fuzzy - they help me keep going with the other hard slog stuff we have to face - thank goodness for these little gems. I have some education stuff happening (negative) but don't want to go into it just now after my enjoyable weekend so will ask for some comments at another time when I'm ready to tackle it.......wish it could be never! Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 2:39 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? HI Gina Just been skyping with Anita. Wow is that scary I think the rule should be only head for camera. I have also just gone to itunes and downloaded away the podcasts?? What are they? Is anyone interested in skypeing? Cheers Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 1:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don' t go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Wed May 20 04:05:29 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 20 May 2009 20:35:29 +0930 Subject: FV: What is inclusion? In-Reply-To: <000001c9d8df$527b51d0$f771f570$@net.au> References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> <000001c9d8df$527b51d0$f771f570$@net.au> Message-ID: Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it?s lovely to hear from you. When are you off on your trip ? must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > Find car news, reviews and more Looking to change your car this year? _________________________________________________________________ Looking to move somewhere new this winter? Let ninemsn property help http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fninemsn%2Edomain%2Ecom%2Eau%2F%3Fs%5Fcid%3DFDMedia%3ANineMSN%5FHotmail%5FTagline&_t=774152450&_r=Domain_tagline&_m=EXT -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Wed May 20 05:21:21 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 20 May 2009 22:21:21 +1000 Subject: FV: What is inclusion? In-Reply-To: References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> <000001c9d8df$527b51d0$f771f570$@net.au> Message-ID: <7D0F7695-4DAE-460C-9079-EB3DCAA55823@aapt.net.au> Hi everyone Have just caught up on everyone's mail as my computer died on the weekend and I've just cranked up my new one. Have got a Mac for the first time so am on a steep learning curve with it. Lovely story about Dan Jo - one of life's pearls! Its these unexpected moments that give us such joy, re-jig our faith in humanity and give us a sense that we must be doing something right! Great work with the meeting Gina. Hope you are documenting your progress/process as I'm sure it will make a great presentation when you have time down the track- maybe at the reciprocal visit! Forgot to ask if you had heard anything back about the abstract for the early intervention conference. Jill > Hello Jo Good to hear you and remember our time at the Ho Down and > of course other moments, How did the film come out. It would be good > to see. > We are off to Dublin in August and now not only will Rachel present > a paper she is being invited to be part of the demonstration Rock > and Roll team. Rather her than me but she seems happy with the task. > there are nine other from the Down Syndrome group who have been > involved for a long time so she has a bit of work to do. Still they > seemed keen to have her after they asked her to go for a audition. > She will also be performing in her two woman show in London so she > is going to be busy. I am looking forward to catching up with > Bridget as she son will both be there, Actually it will be great > because I see from the program that Bruce will also be attending. We > might just have our own little meeting and hear from him how he > thought our visit went. It is a small world really isn't it. We will > spend some time with my sister and her family england and then go to > South Africa on the way home to see my Brothers family. > You take care Miriam > > To: familyvoices at inpress.pledgonline.com > Date: Wed, 20 May 2009 08:10:02 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Thanks Miriam, it?s lovely to hear from you. When are you off on > your trip ? must be coming up fast now. Hope all is well with you > and the family, > Love Jo > > From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com > ] On Behalf Of Family Voices > Sent: Monday, 18 May 2009 7:46 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jo I loved your happy weekend story. and the glimpse of you in > your home. I hope the education stuff gets better for you, sadly it > is such a long hard journey. You take care my warmest wishes Miriam > > > To: familyvoices at inpress.pledgonline.com > > Date: Sun, 17 May 2009 18:48:14 +0800 > > From: familyvoices at inpress.pledgonline.com > > Subject: Re: FV: What is inclusion? > > > > Hi Everyone, > > > > It is 5pm West Aussie time and I have been sitting here with a > loooovely > > glass of Cab/Sav catching up on the conversation on FV learning > from one of > > my favourite sources. > > > > I am feeling pleasantly tired after being away to a Velor > Microboard Weekend > > at Fairbridge (just north of Pinjarra) with another amazing group > of people > > from all over the state learning more about inclusion and how to > invite > > others to be an integral part of our sons life. While I was > learning this > > stuff Dan was out having fun on the flying fox, abseiling, bush > walking etc > > supported by new friends..... > > > > Would like to share this story from the weekend, Dan and a young > man, Jack > > connected with one another on Saturday, I only discovered the > connection > > this morning when Jack walked by at breakfast and I saw Dan's arm > shoot up > > to give him a 'high five', Jack stopped, said good morning, how > are you > > mate, had a bit more of a chat and went off to have brekky. The > abseiling > > was happening after breakfast and after some discussion with the > Coordinator > > she approached Jack to ask if he would take Dan abseiling which he > readily > > agreed to. When lunch time came around, Dan arrived back at the > hall with > > Steve, minus Jack - I was wondering if everything went ok and > decided to > > follow up with him when I could. 15 minutes later he came in and > sat down, > > I thanked him for helping Dan out and he said "it's me that will > be thanking > > Dan", he explained that he had never abseiled before so prior to > taking Dan > > up he did a dummy run on his own, then he went up and down with > Dan. After > > everyone had had their turn the instructor offered Jack a weekend > job, Jack > > said he didn't know much about abseiling and the response was "if > you can > > support someone the way you did with Dan, talking to him all the > way up and > > down, helping him out where he needed, you know everything you > need to > > know". Jack was stoked (he's 16) and I was in awe of him being so > > appreciative of Dan who helped him get the job. One day I'll stop > being > > surprised but right now I still get caught out with how there are > others who > > are so appreciative of our kids. Just wanted to share a warm and > fuzzy - > > they help me keep going with the other hard slog stuff we have to > face - > > thank goodness for these little gems. > > > > I have some education stuff happening (negative) but don't want to > go into > > it just now after my enjoyable weekend so will ask for some > comments at > > another time when I'm ready to tackle it.......wish it could be > never! > > Jo > > > > > > > > -----Original Message----- > > From: familyvoices-bounces at inpress.pledgonline.com > > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > > Voices > > Sent: Sunday, 17 May 2009 2:39 PM > > To: familyvoices at inpress.pledgonline.com > > Subject: Re: FV: What is inclusion? > > > > HI Gina > > Just been skyping with Anita. Wow is that scary I think the rule > should be > > only head for camera. > > > > I have also just gone to itunes and downloaded away the podcasts?? > What are > > they? > > > > Is anyone interested in skypeing? > > Cheers Jane > > > > > > Jane Warner/Hudson > > > > 07 46714737 > > > > > > -----Original Message----- > > From: familyvoices-bounces at inpress.pledgonline.com > > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > > Voices > > Sent: Sunday, May 17, 2009 1:32 PM > > To: familyvoices at inpress.pledgonline.com > > Subject: Re: FV: What is inclusion? > > > > Hi Jane > > > > Bearing in mind I haven't got P2Go at this stage but this is only > as I > > understand it... > > > > Q/ With the prolquo when I go into "about me" Can I put in stuff > where > > it > > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > > then > > work out how, I just don't want to be trying to work something out > that > > I > > cant do. > > > > I believe you can add in your own words etc, you might have to > fiddle > > with the spelling, punctuation etc of Goondawindi to get the voice > to > > say it well enough for you to be happy with, ie it might need some > > phonetic spelling, hyphens etc to work it out. In time you will work > > out how to spell things to have the 'real voice' pronounce it well > > enough. > > > > Q/Which manual or directions do you think are the simplest for > > programming? > > > > Have you joined the P2Go group - there are some great parents who > have > > been beta testing it on that group and they are very keen to help > out. > > I posted the link a while back, but can resend if you need it. These > > are people actually using it for their kids now, so would be great > to > > post your specific questions to them. The developers are very > hands on > > too. > > > > > > Q/ Do you think it would be worth my while to get a Iphone for me? > (I > > saw > > one on ebay that looked ok), Sarah have the Ipod so that I can > learn to > > use > > it while she is. At some stage I would like her to use the phone > just > > not > > sure if this is the right tool. Ie my thought for her was maybe a > phone > > with video connection to me so she can learn mum rings, I see her > face > > and > > from their we learn answering and talk back. > > > > We haven't got the iPhone yet, but this was our plan... Shawn is off > > contract with his phone at the moment having changed jobs and now > for > > the first time in his working career not provided a phone (shame > about > > that). So he was going to lock into a $49 or $59 capped plan to curb > > his costs each month. Optus are currently offering iPhone plans > with a > > 8gig phone at this price so we believe we could sign up to one of > those > > plans, bring his number across to that plan, then move the sim > card to > > his Samsung phone an then just use the iPhone for Mac without a > sim card > > (or buy a cheap prepaid plan if we felt it was good as an emergency > > phone). At least that way I could start developing options for its > use, > > start storing things I would normally store on a stepped switch > > communicator and so on. > > > > I still need to find a way to switch adapt it, no-one has worked > that > > out yet - but I will keep trying. > > > > You would just have to check out the costs/capabilities of video > calls > > if that was a goal - I don't know much about that. Maybe skype is > > available to use via the internet connections rather than phone > calls - > > not sure on that one. > > > > > > In saying all this she is very good with the ipod I put hi five and > > wiggles > > on yesterday and it is a hit. > > > > There are also some great free PIXAR short films on iTunes you can > > download - Mac loves them. Also check out the podcasts that are out > > there. We found heaps of stories for Mac on podcasts (all free). Mac > > has a very eclectic selection on his ipod. Jason Mraz is a big > hit, he > > likes to sing along, but he also likes some albums called 'Little > > Voices' which is kids singing more contemporary and classic songs. > He > > seems to have ended his Tom Jones phase (now that the 'beer ad' is > off > > tv), still partial to some Kiss from time to time. He is a funny kid > > really - he would be happy to have some big political speeches on > there, > > loves a big political statement on the news, he readily 'glaarrs' > along > > with the speaker - we are not sure whether he is 'for or agin' Mr > Rudd > > yet, but he certainly pipes up everytime Kevvy is banging on about > stuff > > on tv or radio. > > > > I am also going to see what I can learn about the Database program > Bento > > which can be used on the iPhone and see if a PODD style system > could be > > converted into that format. Just trying to find some workshops on > PODD > > systems somewhere in the country at the moment so I can learn more. > > > > Sorry more questions, where is the best place to get easy step by > step > > instructions to use ipod ie move programs on front page. > > > > Check out their website at http://www.proloquo2go.com/ > > > > > > > > Can I download a dvd to ipod direct or does everything have to go > thru > > itunes? > > > > I think you can just convert a DVD into ipod formats - there would > be > > software to do that depending on whether you are on PC or Mac. Some > > might be freeware, some cheap, some expensive. Again, since I > haven't > > got the touch yet I can't be sure. > > > > Thanks Gina. You are such a inspirtation, I would love to get you > to do > > a > > workshop for want of a better word in Goondiwindi. The young > families I > > work with could learn so much from you. > > Anytime :-) > > > > Just a thought which I am sure you have covered, when you talk > with the > > school do you have someone beside you? > > > > I have my husband sitting beside me for all these meetings. I > would not > > go in there alone for love nor money. We sometimes don't think it is > > fair on those we meet with. Shawn and I have been together now for > 21 > > years and know exactly where one another sits on issues so we can > play > > the "good cop/bad cop" roles pretty well, and where we know it is > > unfair, is that we switch mid meeting if it is needed. Because Shawn > > has been doing so much study on disability representation in the > Media > > etc he is great because he can just spout stuff, but also because > he is > > a journalist he is trained to question, so he turns their questions > > round back at them - so we know we don't really play fair. We also > don' > > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > > over-rated :-). For example there are kids at the school who have > been > > denied access to other schools because they have 'behavioural and/or > > emotional type issues' (I know, shouldn't happen, shouldn't be > denied > > access anywhere, but it does) so our school does take them with open > > arms, but these families are then sooooo grateful their kid has been > > accepted they are not going to risk making waves and subsequently > they > > have been forced into this position of having to feel grateful and/ > or > > disempowered by the system. So, when you don't do the guilt thing, I > > guess it becomes a bit confronting for 'the system'. > > > > Hope it helps > > > > Feel free to contact me anytime if you think I can be useful. Mac's > > birthday is in June - he might get his iPhone then. So excessive > > providing such a thing to a 6yo but I honestly think it has the > > potential to be such a fab tool for him I will just have to cope > with > > being an over indulgent parent (guilt free of course). > > > > Gina > > > > > > > > ________________________________ > > > > I am using the Free version of SPAMfighter > > . > > We are a community of 6 million users fighting spam. > > SPAMfighter has removed 1588 of my spam emails to date. > > The Professional version does not have this message. > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: > 05/16/09 > > 17:05:00 > > > > > > > > > Find car news, reviews and more Looking to change your car this year? > > Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Wed May 20 05:44:07 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 20 May 2009 20:44:07 +0800 Subject: FV: What is inclusion? In-Reply-To: References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net><132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> <001001c9d837$aedab720$0c902560$@net.au> Message-ID: <000601c9d948$ae379240$0aa6b6c0$@net.au> These are the differences as I see it so far as I'm still learning about Microboards. The Formal Circles of Support I have been working on has been on the PLAN Canada model - they call them Friendship Networks or Circle of Friends, anyhow the basis of that is that you employ a Facilitator (I was lucky to get two - that's Sue and Ewa) to do the asking/inviting people into Dan's circle - this was pretty easy because Dan was already getting together with his friends as we had been having get-togethers fairly regularly - birthday parties, Pizza & Coke nights etc, Sue and Ewa also talked to the young people about how they can continue to be in one another's lives and helped out with problem solving (important for everyone to feel comfortable to express concerns especially the young ones) for instance they wanted to take Dan to the Forum but were worried when it was time to give Dan his lunch - they weren't comfortable to be without an adult (fair enough as Dan chokes easily on food) - solution was to have an adult available who was a little older (20) when they decided to eat - they text messaged her, she gave him his lunch and left them to it afterwards. The Facilitator continues to follow up friends to ensure they follow through with their commitments - the idea is that he/she does as little as possible and as much as is needed - they are just there to keep things ticking over on behalf of Dan (he can't phone/visit people of his own volition). The Microboard is more formal in that it works as a mini Board/Committee - you have a Chairperson etc. The reason I like this model is because Dan has a group of people to help him out (I won't be a member as I tend to want to make people feel comfortable/not let them do too much for us which basically jeopardises the purpose of people coming on board to assist) When the Board is incorporated they can apply for funding - grants/sponsorship etc and manage that on his behalf. I see the Microboard supporting Daniel with many aspects of his life - like ensuring a Facilitator is available to continue the role of developing friendships around Dan (PLAN said that they tried to pull the Facilitator out in the early years but found the Circles dropped off over time - he/she is key to the success of the Circle), should he need equipment ie an accessible van to get around in - they could apply for a grant, the Board can look at housing options - these are just ideas and possible things that could come up - really it'll be whatever it is that Dan needs in his life. I understand I'm sounding like the Microboard is going to be the answer to it all - I don't believe it'll always be smooth sailing without the normal glitches groups experience but I think that sharing this with others will make it so much better for us than trying to do it alone. My experience with the Circle of Friends supports this, it has its ups and downs just like any of us do but on the whole it all comes together and supports Dan in the best possible way. Al Etmanski from PLAN, Canada wrote a book called "The Good Life" which I love and use as my workbook/inspiration - I used this book to kick start me off on the Friendship Circle, along with the other stuff I had picked up along the way. It sounds like you have done a great Facilitators job (I used to do that too but love having Facilitators helping me out). One of the things I did when I invited the kids from school who Dan knew well but they didn't know us was to include in the invitation an explanation to the parents of why we were having a Pizza & Coke night - the feedback from parents was so positive. I find now that when they get together like having lunch down near the river - some parents send along food like a large plate of sandwiches, drinks etc. When Dan is out and about a lot of the parents are now stopping and saying hello even though they may not be with their kids - it somehow gave them permission to stop and have a conversation with him, the note has broken down the barrier for his friends parents. What all of this means for me is that there will be others in Dan's life to continue what I started years ago. My hope is that in the future Dan's Microboard will be made up of people similar in age who will support him beyond my old age and when I fall off the perch! Jaquie has been very successful with Eli's Circle of Friends which has grown entirely out of the Microboard (did I get that right Jaquie?) Hoping all that helps - ask me to clarify and I'll do my best, though Jaquie is full bottle on the Microboard stuff which I'm just learning about. Sounds like to me you've been doing a wonderful job and I know you'll do well in your new town. Hope the rain comes for you - we had a bit today but nothing to get too excited about - there's hope for the rest of the week according to the weather guy. Oh boy, those principal's - good luck, I'll be thinking of you. Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 5:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Jo, Can you explain the difference between micro boards and circles of support? Is one more formal than the other? We haven't had the need to establish this type of thing yet as informal networking, strategic thinking and our connection with kids has been enough however with moving it may become necessary to be more organised. I'm interested in the different set ups? We are hopeful it may rain !!!!! Megs PS meeting with a possible new school principal on the South Coast (Vincentia NSW) on Friday morning and looking at real estate on the weekend. Eldest son home from Europe in 1 week, elderly dog (16) still alive, 2 repeat inspections of our current home tomorrow ...REMINDER TO SELF......all bras off door knobs !! -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 19 May 2009 2:10 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey There Meg, I've been formally developing Dan's Circle of Friends for the past two years to ensure people will stay connected with Dan beyond school, some of these gatherings have been facilitated by my friends Susan & Ewa, sounds official I know but was done with a lot of fun and we found the young people loved it and always ask us when the next one will be on - the way we approach it also helps them to think about their future, who will be in it, what will it look like and so on. I asked Sue and Ewa to do this for me because I've always been in the young people's lives - living 500 metres from the school has meant the kids have always just dropped in to visit, walked Dan home after school etc and they all knew me as Dan's mum (as should be the case) and I wanted to keep it that way which is why I asked Sue and Ewa to take on a more specific role to get people thinking about how they can continue to be in his life when they move off to other schools/TAFE/work.... I have also just joined Microboards (met the families at Fairbridge over the weekend) who are families committed to providing inclusive lives around their family member. Dan's Board members have a relationship with him and will work specifically to develop all sorts of stuff around him - what does he like to do, who with, where he will live - this will happen with Daniel's input at every meeting and in between. Because they have a relationship with him, each member will have different experiences and knowledge about him (very helpful for Daniel who can't tell us in words), they may/will see things in Dan that I or someone else wouldn't which helps to bring information to the Board, who can then come up with ideas on how to achieve whatever it is they have seen Dan communicate to them - bungee jumper (heaven forbid), surfer, truck driver and so on. Oh boy, this is hard writing conversations so if it doesn't make sense please let me know and I'll try to be clearer. I like this idea because it's not me coming up with all the idea's and having to do all the ground work all the time. I have been wonderfully surprised at people wanting to jump on board with this. Dan's friends from school range from 15-17 so they are a little young to be on a Microboard, however we intend to invite them in to have input with Dan - very helpful for the oldies to understand things from a teens perspective. I am applying for Post School Options now and have been talking about after school life for the past two years. Some of the ideas of what Dan's friends see him as 'being' have come out during the facilitated sessions - Dan is a postman, teacher's aide, dog walker, social networker and one young man said he is Rich and will go and live on an island somewhere with his friends (the painting was in bright yellow with dollar signs everywhere, a smiling Daniel with palm trees around him) - I don't know about Dan but I reckon that would suit me! The school stuff is about another new Principal trying to put his stamp on things.....I should be used to it by now but guess it just wears me down a bit and takes a lot of energy and time to build up the new relationship...sigh, violins... Reading the conversation about Gina's experiences and others advice is great and I think most of it can be applied across the board with many facets of our children's lives.....it's certainly giving me the impetus to think about further education for Dan so all coming just at the right time. Ok, now need to go and tiz myself up for the meeting with the Principal Have a beaut day Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 4:53 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Fantastic Jo.....we too are a product of our upbringing and are learning along the way in relation to the reciprocal relationship that is to be had with our loved ones. I know I shouldn't be surprised when a really lovely encounter happens but I am. I cherish the thought that these encounters will be so frequent that they become the norm. I hope the school stuff isn't too terrible. Is some sort of transition from school to post school life, talk happened yet ? What are the options being presented for Dan ? Do you have support in thinking of and enacting a future for him that will provide a good life in the community? Megs -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 8:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Everyone, It is 5pm West Aussie time and I have been sitting here with a loooovely glass of Cab/Sav catching up on the conversation on FV learning from one of my favourite sources. I am feeling pleasantly tired after being away to a Velor Microboard Weekend at Fairbridge (just north of Pinjarra) with another amazing group of people from all over the state learning more about inclusion and how to invite others to be an integral part of our sons life. While I was learning this stuff Dan was out having fun on the flying fox, abseiling, bush walking etc supported by new friends..... Would like to share this story from the weekend, Dan and a young man, Jack connected with one another on Saturday, I only discovered the connection this morning when Jack walked by at breakfast and I saw Dan's arm shoot up to give him a 'high five', Jack stopped, said good morning, how are you mate, had a bit more of a chat and went off to have brekky. The abseiling was happening after breakfast and after some discussion with the Coordinator she approached Jack to ask if he would take Dan abseiling which he readily agreed to. When lunch time came around, Dan arrived back at the hall with Steve, minus Jack - I was wondering if everything went ok and decided to follow up with him when I could. 15 minutes later he came in and sat down, I thanked him for helping Dan out and he said "it's me that will be thanking Dan", he explained that he had never abseiled before so prior to taking Dan up he did a dummy run on his own, then he went up and down with Dan. After everyone had had their turn the instructor offered Jack a weekend job, Jack said he didn't know much about abseiling and the response was "if you can support someone the way you did with Dan, talking to him all the way up and down, helping him out where he needed, you know everything you need to know". Jack was stoked (he's 16) and I was in awe of him being so appreciative of Dan who helped him get the job. One day I'll stop being surprised but right now I still get caught out with how there are others who are so appreciative of our kids. Just wanted to share a warm and fuzzy - they help me keep going with the other hard slog stuff we have to face - thank goodness for these little gems. I have some education stuff happening (negative) but don't want to go into it just now after my enjoyable weekend so will ask for some comments at another time when I'm ready to tackle it.......wish it could be never! Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, 17 May 2009 2:39 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? HI Gina Just been skyping with Anita. Wow is that scary I think the rule should be only head for camera. I have also just gone to itunes and downloaded away the podcasts?? What are they? Is anyone interested in skypeing? Cheers Jane Jane Warner/Hudson 07 46714737 -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Sunday, May 17, 2009 1:32 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jane Bearing in mind I haven't got P2Go at this stage but this is only as I understand it... Q/ With the prolquo when I go into "about me" Can I put in stuff where it says "I go to the .....school?" ie Goondiwindi. If it is yes I will then work out how, I just don't want to be trying to work something out that I cant do. I believe you can add in your own words etc, you might have to fiddle with the spelling, punctuation etc of Goondawindi to get the voice to say it well enough for you to be happy with, ie it might need some phonetic spelling, hyphens etc to work it out. In time you will work out how to spell things to have the 'real voice' pronounce it well enough. Q/Which manual or directions do you think are the simplest for programming? Have you joined the P2Go group - there are some great parents who have been beta testing it on that group and they are very keen to help out. I posted the link a while back, but can resend if you need it. These are people actually using it for their kids now, so would be great to post your specific questions to them. The developers are very hands on too. Q/ Do you think it would be worth my while to get a Iphone for me? (I saw one on ebay that looked ok), Sarah have the Ipod so that I can learn to use it while she is. At some stage I would like her to use the phone just not sure if this is the right tool. Ie my thought for her was maybe a phone with video connection to me so she can learn mum rings, I see her face and from their we learn answering and talk back. We haven't got the iPhone yet, but this was our plan... Shawn is off contract with his phone at the moment having changed jobs and now for the first time in his working career not provided a phone (shame about that). So he was going to lock into a $49 or $59 capped plan to curb his costs each month. Optus are currently offering iPhone plans with a 8gig phone at this price so we believe we could sign up to one of those plans, bring his number across to that plan, then move the sim card to his Samsung phone an then just use the iPhone for Mac without a sim card (or buy a cheap prepaid plan if we felt it was good as an emergency phone). At least that way I could start developing options for its use, start storing things I would normally store on a stepped switch communicator and so on. I still need to find a way to switch adapt it, no-one has worked that out yet - but I will keep trying. You would just have to check out the costs/capabilities of video calls if that was a goal - I don't know much about that. Maybe skype is available to use via the internet connections rather than phone calls - not sure on that one. In saying all this she is very good with the ipod I put hi five and wiggles on yesterday and it is a hit. There are also some great free PIXAR short films on iTunes you can download - Mac loves them. Also check out the podcasts that are out there. We found heaps of stories for Mac on podcasts (all free). Mac has a very eclectic selection on his ipod. Jason Mraz is a big hit, he likes to sing along, but he also likes some albums called 'Little Voices' which is kids singing more contemporary and classic songs. He seems to have ended his Tom Jones phase (now that the 'beer ad' is off tv), still partial to some Kiss from time to time. He is a funny kid really - he would be happy to have some big political speeches on there, loves a big political statement on the news, he readily 'glaarrs' along with the speaker - we are not sure whether he is 'for or agin' Mr Rudd yet, but he certainly pipes up everytime Kevvy is banging on about stuff on tv or radio. I am also going to see what I can learn about the Database program Bento which can be used on the iPhone and see if a PODD style system could be converted into that format. Just trying to find some workshops on PODD systems somewhere in the country at the moment so I can learn more. Sorry more questions, where is the best place to get easy step by step instructions to use ipod ie move programs on front page. Check out their website at http://www.proloquo2go.com/ Can I download a dvd to ipod direct or does everything have to go thru itunes? I think you can just convert a DVD into ipod formats - there would be software to do that depending on whether you are on PC or Mac. Some might be freeware, some cheap, some expensive. Again, since I haven't got the touch yet I can't be sure. Thanks Gina. You are such a inspirtation, I would love to get you to do a workshop for want of a better word in Goondiwindi. The young families I work with could learn so much from you. Anytime :-) Just a thought which I am sure you have covered, when you talk with the school do you have someone beside you? I have my husband sitting beside me for all these meetings. I would not go in there alone for love nor money. We sometimes don't think it is fair on those we meet with. Shawn and I have been together now for 21 years and know exactly where one another sits on issues so we can play the "good cop/bad cop" roles pretty well, and where we know it is unfair, is that we switch mid meeting if it is needed. Because Shawn has been doing so much study on disability representation in the Media etc he is great because he can just spout stuff, but also because he is a journalist he is trained to question, so he turns their questions round back at them - so we know we don't really play fair. We also don' t go in for all the 'guilt' stuff we are meant to - guilt is soooo over-rated :-). For example there are kids at the school who have been denied access to other schools because they have 'behavioural and/or emotional type issues' (I know, shouldn't happen, shouldn't be denied access anywhere, but it does) so our school does take them with open arms, but these families are then sooooo grateful their kid has been accepted they are not going to risk making waves and subsequently they have been forced into this position of having to feel grateful and/or disempowered by the system. So, when you don't do the guilt thing, I guess it becomes a bit confronting for 'the system'. Hope it helps Feel free to contact me anytime if you think I can be useful. Mac's birthday is in June - he might get his iPhone then. So excessive providing such a thing to a 6yo but I honestly think it has the potential to be such a fab tool for him I will just have to cope with being an over indulgent parent (guilt free of course). Gina ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1588 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 17:05:00 From familyvoices at inpress.pledgonline.com Wed May 20 05:50:43 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 20 May 2009 20:50:43 +0800 Subject: FV: What is inclusion? In-Reply-To: References: <7rkm5b$ago8vq@ipmail01.adl6.internode.on.net> <132DD797EAEB43B5B9E8EDCFFB12748B@dell91> <003001c9d6dc$fae9b820$f0bd2860$@net.au> <000001c9d8df$527b51d0$f771f570$@net.au> Message-ID: <000a01c9d949$966744c0$c335ce40$@net.au> Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Wed May 20 23:28:52 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 21 May 2009 16:28:52 +1000 Subject: FV: What is inclusion? In-Reply-To: <000a01c9d949$966744c0$c335ce40$@net.au> Message-ID: <008501c9d9dd$697e3b50$c600a8c0@ANITA> Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Wed May 20 23:47:41 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 21 May 2009 16:47:41 +1000 Subject: FV: What is inclusion? References: <008501c9d9dd$697e3b50$c600a8c0@ANITA> Message-ID: <172F386E13044A428262A61380719B82DA002E@jcmail> Hi Anita! Long time no speak .... Hmmmmm. Interesting. Some thoughts that come to mind * just because you feel you have had to settle with something for your mum, doesn't mean it goes against all you believe in. That is, you are not going against your beliefs. You are just living in the world as it exists! and a particular context. These are always very private affairs. * Knowing what could be and what exists are 2 different things * So it's the same principles - other things could be possible for other vulnerable groups that don't currently exist. This is our pain, and also perhaps our motivation to create something different * Her choice would be her family home and hide away - surely this is the point. Dignity, meaning and inclusion are very personal matters. It seems to me that you can be a person who wants to hide away and that is a meaningful existence. especially if you have lived most of your life already! We need to be careful that we're not saying that "Inclusion must mean spending X hours with others or have X number friendships etc" otherwise it isn't inclusion. We can really beat ourselves up about this stuff. * Like with our family members with disability, it is important not to be seduced by that thing of conflating fundamental need with a program or service type like a hostel or day program etc. Even to be able to express need without bundling it up in a service I have found very liberating and helps me to see that other things can help to respond to this need - eg Matthew needs something meaningful to do in the day leads to lots of different things than saying he needs a day program. But this is all stuff you know Anita!!! so apologies ..... always start from the great things you already know and experience with Warren Don't beat yourself up about things that really suck and are often beyond our control. Be gentle on yourself. Love Lib _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 4:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > ________________________________ Find car news, reviews and more Looking to change your car this year? ________________________________ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu May 21 16:41:37 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 22 May 2009 09:41:37 +1000 Subject: FV: What is inclusion? In-Reply-To: <172F386E13044A428262A61380719B82DA002E@jcmail> Message-ID: <000c01c9da6d$af50d350$c600a8c0@ANITA> Thanks so much Libby - you are a treasure! I'll try to be gentle on myself; one can go around in circles in trying to provide the care that is needed, as the individual's (Mother) response can thwart the best of solutions/intentions sometimes. Old age and failing health bring different responses; I am reminded that though I know Mother quite well I have not 'walked in her moccasins'. xo Anita J -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Thursday, 21 May 2009 4:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Anita! Long time no speak .... Hmmmmm. Interesting. Some thoughts that come to mind * just because you feel you have had to settle with something for your mum, doesn't mean it goes against all you believe in. That is, you are not going against your beliefs. You are just living in the world as it exists! and a particular context. These are always very private affairs. * Knowing what could be and what exists are 2 different things * So it's the same principles - other things could be possible for other vulnerable groups that don't currently exist. This is our pain, and also perhaps our motivation to create something different * Her choice would be her family home and hide away - surely this is the point. Dignity, meaning and inclusion are very personal matters. It seems to me that you can be a person who wants to hide away and that is a meaningful existence. especially if you have lived most of your life already! We need to be careful that we're not saying that "Inclusion must mean spending X hours with others or have X number friendships etc" otherwise it isn't inclusion. We can really beat ourselves up about this stuff. * Like with our family members with disability, it is important not to be seduced by that thing of conflating fundamental need with a program or service type like a hostel or day program etc. Even to be able to express need without bundling it up in a service I have found very liberating and helps me to see that other things can help to respond to this need - eg Matthew needs something meaningful to do in the day leads to lots of different things than saying he needs a day program. But this is all stuff you know Anita!!! so apologies ..... always start from the great things you already know and experience with Warren Don't beat yourself up about things that really suck and are often beyond our control. Be gentle on yourself. Love Lib _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 4:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu May 21 19:56:30 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 22 May 2009 10:56:30 +0800 Subject: FV: What is inclusion? References: <000c01c9da6d$af50d350$c600a8c0@ANITA> Message-ID: <8D097A78893844A981EF7CDA3521F986@hp> MessageHi Guys have been very busy at the moment. middle of the tourist season. but have been reading all the going ons. keep the voices going . Cheers, Al from the Kimberley. ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Friday, May 22, 2009 7:41 AM Subject: Re: FV: What is inclusion? Thanks so much Libby - you are a treasure! I'll try to be gentle on myself; one can go around in circles in trying to provide the care that is needed, as the individual's (Mother) response can thwart the best of solutions/intentions sometimes. Old age and failing health bring different responses; I am reminded that though I know Mother quite well I have not 'walked in her moccasins'. xo Anita J -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Thursday, 21 May 2009 4:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Anita! Long time no speak .... Hmmmmm. Interesting. Some thoughts that come to mind a.. just because you feel you have had to settle with something for your mum, doesn't mean it goes against all you believe in. That is, you are not going against your beliefs. You are just living in the world as it exists! and a particular context. These are always very private affairs. b.. Knowing what could be and what exists are 2 different things c.. So it's the same principles - other things could be possible for other vulnerable groups that don't currently exist. This is our pain, and also perhaps our motivation to create something different d.. Her choice would be her family home and hide away - surely this is the point. Dignity, meaning and inclusion are very personal matters. It seems to me that you can be a person who wants to hide away and that is a meaningful existence. especially if you have lived most of your life already! We need to be careful that we're not saying that "Inclusion must mean spending X hours with others or have X number friendships etc" otherwise it isn't inclusion. We can really beat ourselves up about this stuff. e.. Like with our family members with disability, it is important not to be seduced by that thing of conflating fundamental need with a program or service type like a hostel or day program etc. Even to be able to express need without bundling it up in a service I have found very liberating and helps me to see that other things can help to respond to this need - eg Matthew needs something meaningful to do in the day leads to lots of different things than saying he needs a day program. But this is all stuff you know Anita!!! so apologies ..... always start from the great things you already know and experience with Warren Don't beat yourself up about things that really suck and are often beyond our control. Be gentle on yourself. Love Lib _________________________________ ---------------------------------------------------------------------------- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 4:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam -------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > -------------------------------------------------------------------------- Find car news, reviews and more Looking to change your car this year? -------------------------------------------------------------------------- Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu May 21 22:51:50 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 22 May 2009 15:51:50 +1000 Subject: FV: FIVE MINUTES ON FRIDAY Message-ID: <000401c9daa1$6771c970$c600a8c0@ANITA> Hello everyone, Warren receives an email every Friday from St Vincent's Hospital where he is a volunteer. Thought I would pass this one on to you all.. Five minutes on Friday A friend loaned me a DVD recently called Crash. It's the story of 7 or 8 people whose lives intersect in 24hours in Los Angeles. There are several themes running through the film, most noticeably anger and rage. People's reactions to one another under difficult circumstances were defensive, and hostile. People presumed the worst of each other and acted accordingly. It is a disturbing film and watching it left me wondering about the ways in which we interact with each other in the daily life of our work and our relationships. Caring for others is a demanding career and if we are not attuned to our own inner thoughts and feelings, the demands of such care can take a toll on each of us. We can be left feeling spent, exhausted and resentful. And it is at times like this that we have a choice to make. We can either respond defensively to others, or try to be kind. How many disagreements in the workplace could be avoided if we just slowed down and considered for a moment where the other person is coming from? What if we stopped presuming to know and judge the motivations of another and simply asked? How many human interactions do we see in a day that escalate into anger and hostility through defensive behaviour and a failure to understand one another? When someone cuts in front of us in traffic, or fires off an angry email, how do we respond? The Irish poet John O'Donoghue wrote of the 'Structures of Kindness' in his book, Benedictus... There is a kindness that dwells deep down in things: it presides everywhere, often in the places we least expect. The world can be harsh and negative; but if we remain generous and patient, kindness inevitably reveals itself. Something deep in the human soul seems to depend on the presence of kindness; something instincitve in us expects it, and once we sense it we are able to trust and open ourselves... Kindness has gracious eyes; it is not small-minded or competitive; it wants nothing back for itself... Depsite all the darkness, human hope is based on the instinct that at the deepest level of reality some intimate kindness holds sway. If we soften our stance toward others, we notice a change in ourselves. In the midst of the pressures and demands of each day we make a thousand choices; to be defensive or kind is just one of them. Yet it holds a remarkable power to influence the shape of our lives. Marcelle Mogg Director of Mission St Vincent's xo J Anita O -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 00:28:19 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 24 May 2009 15:28:19 +0800 Subject: FV: What is inclusion? In-Reply-To: <008501c9d9dd$697e3b50$c600a8c0@ANITA> References: <000a01c9d949$966744c0$c335ce40$@net.au> <008501c9d9dd$697e3b50$c600a8c0@ANITA> Message-ID: <004401c9dc41$368b17c0$a3a14740$@net.au> Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 03:13:25 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 24 May 2009 20:13:25 +1000 Subject: FV: What is inclusion? In-Reply-To: <004401c9dc41$368b17c0$a3a14740$@net.au> Message-ID: <000f01c9dc58$47148650$c600a8c0@ANITA> Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 17:01:05 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 25 May 2009 10:01:05 +1000 Subject: FV: What is inclusion? References: <000f01c9dc58$47148650$c600a8c0@ANITA> Message-ID: MessageHello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam -------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > -------------------------------------------------------------------------- Find car news, reviews and more Looking to change your car this year? -------------------------------------------------------------------------- Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 18:07:34 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 25 May 2009 11:07:34 +1000 Subject: FV: What is inclusion? In-Reply-To: Message-ID: <001901c9dcd5$30d044b0$c600a8c0@ANITA> Hi Maureen, That's a wonderful story of Lauren's growing independence - so encouraging and it must warm your heart as it does mine to hear it; As with Lauren, Warren certainly has his own way of showing us that he loves us. Catch up soooooooooooon. xo J Anita -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Monday, 25 May 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 18:37:33 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 25 May 2009 11:07:33 +0930 Subject: FV: What is inclusion? In-Reply-To: References: <000f01c9dc58$47148650$c600a8c0@ANITA> Message-ID: <19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill > Hello everyone, > Life has been busy here and I have been reading all the > contributions and not participating. Just reading.. > "Moving Mum"can be as stressful as thinking about moving our young > ones into places of their own. As I have a 91 y.o. Mum who lives in > an retirement apartment and is very independent, but she can't drive > or attend medical appointments without some assistance and so I (and > others) are always there for her. We are a huge family, and we love > sharing the responsibility of Mum, but for others like Anita, who > are "IT" - the problems can't be shared - there is a huge > responsibility. > There is such a close parallel between disability and aged care. I > often see the same issues arise between Mum and Lauren. Age is not > the barrier! > > My good story for the day is.. > Murdoch and I went to Hobart for three nights of respite and golf.. > We ate too much and drank too much and went to the casino and the > horse track and generally enjoyed ourselves. > All this was possible because we "bit the bullet"and left Lauren at > home - ALONE!! > I had prepared a few meals in advance. She ordered a Pizza to share > with a friend who came over and stayed on Saturday night. They took > themselves out to brunch on Sunday morning and she managed her life > and recreation very well without us.. We are delighted to tell you > we are > very excited about her independence, but more so, she was so > delighted to see us!! > > Aren't we lucky? To be greeted so lovingly and warmly when we drove > in the garage and her little laughing face was at the door. My other > kids never greet me so welcomingly! She really loves us..That is so > nice. It is so evident even though she just can't bring herself to > mouth the words"I love you Mum and Dad"- We have blessed evidence > and that is so nice for us! > > I hope you are all well > Maureen > > ----- Original Message ----- > From: Family Voices > To: familyvoices at inpress.pledgonline.com > Sent: Sunday, May 24, 2009 8:13 PM > Subject: Re: FV: What is inclusion? > > Thanks Jaquie . . . I appreciate your thoughts - I'm off on a > holiday for two weeks so hopefully I'll come back with a peaceful > and clearer mind! > > Cheers! > J > Anita O'Brien > 6 Bogong Court > Doncaster East 3109 > Ph: 03 9841 8492 > Mobile: 0416 064 045 > email: anita.obrien at optusnet.com.au > > -----Original Message----- > From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] > Sent: Sunday, 24 May 2009 5:28 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hey Anita > > I just went through this myself. > > I don?t really have any sage advice, other than to say that the > microboard model has been extended in North America to successfully > cover situations like this one..ie so folks can be supported at > home. That probably doesn?t help you directly as the model is still > so much in development, but is there a way you could use the circle > of friends idea to provide support to your mum in the new > location....these issues we face with our kids are the same we all > face at the times we most need support. Even if your mum needs to > live in the ILU or somewhere with more supported, person centred > planning can still help to make the service provision and her life > as close as possible to what she wants and needs. Also Essential > Lifestyle Planning is really good in this situation. > > I feel for you....it seems a cruel thing that us parents seem to > commonly have to deal with our kids and our parents transitions at > the same time. > > Let me know when you have downloaded Skype! > > Jaquie > > From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com > ] On Behalf Of Family Voices > Sent: Thursday, 21 May 2009 2:29 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi everyone, > > Loved the Kathie Snow statement AnitaS! > > Great story about Dan & Jack, Jo, of what can happen out there in > the community, how Dan was the connector! These experiences do keep > you going. > > Inclusion for the elderly - don't always want it. > I have been spending much time caring for my 88-yr old mother in > law, who has shifted unwillingly to an independent living unit in a > retirement village. She needs quite a lot of support and we have > some in place, but she really needs hostel care or nursing home. We > tried to make the transition easier for her from home to ILU. It > would have been great for her to stay in her own home and we have > been supporting her to do so for nine years plus, but her > vulnerability is such that we had no choice. Quite a few people > she knows in the village but up to now she doesn't seem to want to > mingle anymore than she has to. This situation seems to go against > all I believe and work towards for Warren; Her choice would be her > family home - & hide away. On top of this we have had a mountain of > cleaning up to do to get her house ready for sale. If anyone has > some sage advice I'm happy to listen. > > Thinking about getting on Skype myself - let you know how I go Jo. > > Warm wishes to everyone! > xo > AnitaO > > -----Original Message----- > From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] > Sent: Wednesday, 20 May 2009 10:51 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > Wow, I?m worn out thinking about all that travelling ? I hope it?ll > be for a few weeks. Yes, it is a small world and what a great > opportunity to catch up with Bruce to maybe get his reflections. Go > Girl ? congratulations Rachel on getting the gig ? I looove Rock n > Roll (am I on the right track). > > I?ll get dad to run a copy of the DVD for you (are you reading this > dad?) ? not a heap on it but enough to enjoy and bring back those > memories. > > Love Jo > From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com > ] On Behalf Of Family Voices > Sent: Wednesday, 20 May 2009 7:05 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hello Jo Good to hear you and remember our time at the Ho Down and > of course other moments, How did the film come out. It would be good > to see. > We are off to Dublin in August and now not only will Rachel present > a paper she is being invited to be part of the demonstration Rock > and Roll team. Rather her than me but she seems happy with the task. > there are nine other from the Down Syndrome group who have been > involved for a long time so she has a bit of work to do. Still they > seemed keen to have her after they asked her to go for a audition. > She will also be performing in her two woman show in London so she > is going to be busy. I am looking forward to catching up with > Bridget as she son will both be there, Actually it will be great > because I see from the program that Bruce will also be attending. We > might just have our own little meeting and hear from him how he > thought our visit went. It is a small world really isn't it. We will > spend some time with my sister and her family england and then go to > South Africa on the way home to see my Brothers family. > You take care Miriam > To: familyvoices at inpress.pledgonline.com > Date: Wed, 20 May 2009 08:10:02 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > Thanks Miriam, it?s lovely to hear from you. When are you off on > your trip ? must be coming up fast now. Hope all is well with you > and the family, > Love Jo > > From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com > ] On Behalf Of Family Voices > Sent: Monday, 18 May 2009 7:46 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jo I loved your happy weekend story. and the glimpse of you in > your home. I hope the education stuff gets better for you, sadly it > is such a long hard journey. You take care my warmest wishes Miriam > > > To: familyvoices at inpress.pledgonline.com > > Date: Sun, 17 May 2009 18:48:14 +0800 > > From: familyvoices at inpress.pledgonline.com > > Subject: Re: FV: What is inclusion? > > > > Hi Everyone, > > > > It is 5pm West Aussie time and I have been sitting here with a > loooovely > > glass of Cab/Sav catching up on the conversation on FV learning > from one of > > my favourite sources. > > > > I am feeling pleasantly tired after being away to a Velor > Microboard Weekend > > at Fairbridge (just north of Pinjarra) with another amazing group > of people > > from all over the state learning more about inclusion and how to > invite > > others to be an integral part of our sons life. While I was > learning this > > stuff Dan was out having fun on the flying fox, abseiling, bush > walking etc > > supported by new friends..... > > > > Would like to share this story from the weekend, Dan and a young > man, Jack > > connected with one another on Saturday, I only discovered the > connection > > this morning when Jack walked by at breakfast and I saw Dan's arm > shoot up > > to give him a 'high five', Jack stopped, said good morning, how > are you > > mate, had a bit more of a chat and went off to have brekky. The > abseiling > > was happening after breakfast and after some discussion with the > Coordinator > > she approached Jack to ask if he would take Dan abseiling which he > readily > > agreed to. When lunch time came around, Dan arrived back at the > hall with > > Steve, minus Jack - I was wondering if everything went ok and > decided to > > follow up with him when I could. 15 minutes later he came in and > sat down, > > I thanked him for helping Dan out and he said "it's me that will > be thanking > > Dan", he explained that he had never abseiled before so prior to > taking Dan > > up he did a dummy run on his own, then he went up and down with > Dan. After > > everyone had had their turn the instructor offered Jack a weekend > job, Jack > > said he didn't know much about abseiling and the response was "if > you can > > support someone the way you did with Dan, talking to him all the > way up and > > down, helping him out where he needed, you know everything you > need to > > know". Jack was stoked (he's 16) and I was in awe of him being so > > appreciative of Dan who helped him get the job. One day I'll stop > being > > surprised but right now I still get caught out with how there are > others who > > are so appreciative of our kids. Just wanted to share a warm and > fuzzy - > > they help me keep going with the other hard slog stuff we have to > face - > > thank goodness for these little gems. > > > > I have some education stuff happening (negative) but don't want to > go into > > it just now after my enjoyable weekend so will ask for some > comments at > > another time when I'm ready to tackle it.......wish it could be > never! > > Jo > > > > > > > > -----Original Message----- > > From: familyvoices-bounces at inpress.pledgonline.com > > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > > Voices > > Sent: Sunday, 17 May 2009 2:39 PM > > To: familyvoices at inpress.pledgonline.com > > Subject: Re: FV: What is inclusion? > > > > HI Gina > > Just been skyping with Anita. Wow is that scary I think the rule > should be > > only head for camera. > > > > I have also just gone to itunes and downloaded away the podcasts?? > What are > > they? > > > > Is anyone interested in skypeing? > > Cheers Jane > > > > > > Jane Warner/Hudson > > > > 07 46714737 > > > > > > -----Original Message----- > > From: familyvoices-bounces at inpress.pledgonline.com > > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > > Voices > > Sent: Sunday, May 17, 2009 1:32 PM > > To: familyvoices at inpress.pledgonline.com > > Subject: Re: FV: What is inclusion? > > > > Hi Jane > > > > Bearing in mind I haven't got P2Go at this stage but this is only > as I > > understand it... > > > > Q/ With the prolquo when I go into "about me" Can I put in stuff > where > > it > > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > > then > > work out how, I just don't want to be trying to work something out > that > > I > > cant do. > > > > I believe you can add in your own words etc, you might have to > fiddle > > with the spelling, punctuation etc of Goondawindi to get the voice > to > > say it well enough for you to be happy with, ie it might need some > > phonetic spelling, hyphens etc to work it out. In time you will work > > out how to spell things to have the 'real voice' pronounce it well > > enough. > > > > Q/Which manual or directions do you think are the simplest for > > programming? > > > > Have you joined the P2Go group - there are some great parents who > have > > been beta testing it on that group and they are very keen to help > out. > > I posted the link a while back, but can resend if you need it. These > > are people actually using it for their kids now, so would be great > to > > post your specific questions to them. The developers are very > hands on > > too. > > > > > > Q/ Do you think it would be worth my while to get a Iphone for me? > (I > > saw > > one on ebay that looked ok), Sarah have the Ipod so that I can > learn to > > use > > it while she is. At some stage I would like her to use the phone > just > > not > > sure if this is the right tool. Ie my thought for her was maybe a > phone > > with video connection to me so she can learn mum rings, I see her > face > > and > > from their we learn answering and talk back. > > > > We haven't got the iPhone yet, but this was our plan... Shawn is off > > contract with his phone at the moment having changed jobs and now > for > > the first time in his working career not provided a phone (shame > about > > that). So he was going to lock into a $49 or $59 capped plan to curb > > his costs each month. Optus are currently offering iPhone plans > with a > > 8gig phone at this price so we believe we could sign up to one of > those > > plans, bring his number across to that plan, then move the sim > card to > > his Samsung phone an then just use the iPhone for Mac without a > sim card > > (or buy a cheap prepaid plan if we felt it was good as an emergency > > phone). At least that way I could start developing options for its > use, > > start storing things I would normally store on a stepped switch > > communicator and so on. > > > > I still need to find a way to switch adapt it, no-one has worked > that > > out yet - but I will keep trying. > > > > You would just have to check out the costs/capabilities of video > calls > > if that was a goal - I don't know much about that. Maybe skype is > > available to use via the internet connections rather than phone > calls - > > not sure on that one. > > > > > > In saying all this she is very good with the ipod I put hi five and > > wiggles > > on yesterday and it is a hit. > > > > There are also some great free PIXAR short films on iTunes you can > > download - Mac loves them. Also check out the podcasts that are out > > there. We found heaps of stories for Mac on podcasts (all free). Mac > > has a very eclectic selection on his ipod. Jason Mraz is a big > hit, he > > likes to sing along, but he also likes some albums called 'Little > > Voices' which is kids singing more contemporary and classic songs. > He > > seems to have ended his Tom Jones phase (now that the 'beer ad' is > off > > tv), still partial to some Kiss from time to time. He is a funny kid > > really - he would be happy to have some big political speeches on > there, > > loves a big political statement on the news, he readily 'glaarrs' > along > > with the speaker - we are not sure whether he is 'for or agin' Mr > Rudd > > yet, but he certainly pipes up everytime Kevvy is banging on about > stuff > > on tv or radio. > > > > I am also going to see what I can learn about the Database program > Bento > > which can be used on the iPhone and see if a PODD style system > could be > > converted into that format. Just trying to find some workshops on > PODD > > systems somewhere in the country at the moment so I can learn more. > > > > Sorry more questions, where is the best place to get easy step by > step > > instructions to use ipod ie move programs on front page. > > > > Check out their website at http://www.proloquo2go.com/ > > > > > > > > Can I download a dvd to ipod direct or does everything have to go > thru > > itunes? > > > > I think you can just convert a DVD into ipod formats - there would > be > > software to do that depending on whether you are on PC or Mac. Some > > might be freeware, some cheap, some expensive. Again, since I > haven't > > got the touch yet I can't be sure. > > > > Thanks Gina. You are such a inspirtation, I would love to get you > to do > > a > > workshop for want of a better word in Goondiwindi. The young > families I > > work with could learn so much from you. > > Anytime :-) > > > > Just a thought which I am sure you have covered, when you talk > with the > > school do you have someone beside you? > > > > I have my husband sitting beside me for all these meetings. I > would not > > go in there alone for love nor money. We sometimes don't think it is > > fair on those we meet with. Shawn and I have been together now for > 21 > > years and know exactly where one another sits on issues so we can > play > > the "good cop/bad cop" roles pretty well, and where we know it is > > unfair, is that we switch mid meeting if it is needed. Because Shawn > > has been doing so much study on disability representation in the > Media > > etc he is great because he can just spout stuff, but also because > he is > > a journalist he is trained to question, so he turns their questions > > round back at them - so we know we don't really play fair. We also > don' > > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > > over-rated :-). For example there are kids at the school who have > been > > denied access to other schools because they have 'behavioural and/or > > emotional type issues' (I know, shouldn't happen, shouldn't be > denied > > access anywhere, but it does) so our school does take them with open > > arms, but these families are then sooooo grateful their kid has been > > accepted they are not going to risk making waves and subsequently > they > > have been forced into this position of having to feel grateful and/ > or > > disempowered by the system. So, when you don't do the guilt thing, I > > guess it becomes a bit confronting for 'the system'. > > > > Hope it helps > > > > Feel free to contact me anytime if you think I can be useful. Mac's > > birthday is in June - he might get his iPhone then. So excessive > > providing such a thing to a 6yo but I honestly think it has the > > potential to be such a fab tool for him I will just have to cope > with > > being an over indulgent parent (guilt free of course). > > > > Gina > > > > > > > > ________________________________ > > > > I am using the Free version of SPAMfighter > > . > > We are a community of 6 million users fighting spam. > > SPAMfighter has removed 1588 of my spam emails to date. > > The Professional version does not have this message. > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: > 05/16/09 > > 17:05:00 > > > > > > > > > Find car news, reviews and more Looking to change your car this year? > > Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 18:49:17 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 25 May 2009 11:49:17 +1000 Subject: FV: What is inclusion? References: <000f01c9dc58$47148650$c600a8c0@ANITA> <19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> Message-ID: <65C85FB807EB430A82135C087DF32700@D8XYGK1S> Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don?t really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn?t help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I?m worn out thinking about all that travelling ? I hope it?ll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl ? congratulations Rachel on getting the gig ? I looove Rock n Roll (am I on the right track). I?ll get dad to run a copy of the DVD for you (are you reading this dad?) ? not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam ---------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it?s lovely to hear from you. When are you off on your trip ? must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > ---------------------------------------------------------------------- Find car news, reviews and more Looking to change your car this year? ---------------------------------------------------------------------- Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 19:15:12 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 25 May 2009 10:15:12 +0800 Subject: FV: What is inclusion? In-Reply-To: References: <000f01c9dc58$47148650$c600a8c0@ANITA> Message-ID: <001201c9dcde$a2d861b0$e8892510$@net.au> Beautiful story Maureen and well done Lauren, I have two teens and understand what you mean by the differences in greetings - Dan is always up for a hug, I encourage Jase to give me a kiss hello/goodbye. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 8:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 19:26:15 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 25 May 2009 11:56:15 +0930 Subject: FV: What is inclusion? In-Reply-To: <65C85FB807EB430A82135C087DF32700@D8XYGK1S> References: <000f01c9dc58$47148650$c600a8c0@ANITA> <19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S> Message-ID: <37C418F2-882A-4514-8FE7-6A916BCF34A6@aapt.net.au> Hi Maureen We will be in Costa Rica for the first two weeks of September. Not too sure about it all now, as the swine flu is all around there and all visitors returning from Panama and Mexico are being asked to quarantine themselves for a week when they get home. Hope it's all over by then! Cheers Jill On 25/05/2009, at 11:19 AM, Family Voices wrote: > Hi Jill, Interesting that the wording was the hold back. I did ask > Lauren if she was lonely and was our home too big for her to manage. > But she just looked at me vaguely and said no. Maybe I should word > it differently. I don't want her to feel she HAS to move away from > her security either. It might take years for us to get to a place > where she lives independently of us, but I feel we have started her > thinking she can do it. > When are you going to S----- Original Message ----- > From: Family Voices > To: familyvoices at inpress.pledgonline.com > Sent: Monday, May 25, 2009 11:37 AM > Subject: Re: FV: What is inclusion? > > Hi Maureen > Great news about Lauren's 'holiday'! I can relate to it so well as > it was the same for me with Ben when I returned from Canada. > Apart from his solo experience whilst I was in Canada, I eventually > worked out what was adding to his concern re living independently. > I used to say to him "wouldn't you like to live by yourself?" or > something similar and just lately twigged that he was taking this > literally and thinking that he would be just in the house by himself > with nothing else happening! When I thought to add that he would > still go to work, go out with friends, visit me etc, his whole > attitude changed. Silly me, thought he was a mind reader! Ben has > now agreed to having a look at some places for himself, so we will > gradually do some open inspections. More holidays on the horizon > for you! > Regards > Jill > > >> Hello everyone, >> Life has been busy here and I have been reading all the >> contributions and not participating. Just reading.. >> "Moving Mum"can be as stressful as thinking about moving our young >> ones into places of their own. As I have a 91 y.o. Mum who lives in >> an retirement apartment and is very independent, but she can't >> drive or attend medical appointments without some assistance and so >> I (and others) are always there for her. We are a huge family, and >> we love sharing the responsibility of Mum, but for others like >> Anita, who are "IT" - the problems can't be shared - there is a >> huge responsibility. >> There is such a close parallel between disability and aged care. I >> often see the same issues arise between Mum and Lauren. Age is not >> the barrier! >> >> My good story for the day is.. >> Murdoch and I went to Hobart for three nights of respite and golf.. >> We ate too much and drank too much and went to the casino and the >> horse track and generally enjoyed ourselves. >> All this was possible because we "bit the bullet"and left Lauren at >> home - ALONE!! >> I had prepared a few meals in advance. She ordered a Pizza to share >> with a friend who came over and stayed on Saturday night. They took >> themselves out to brunch on Sunday morning and she managed her life >> and recreation very well without us.. We are delighted to tell you >> we are >> very excited about her independence, but more so, she was so >> delighted to see us!! >> >> Aren't we lucky? To be greeted so lovingly and warmly when we drove >> in the garage and her little laughing face was at the door. My >> other kids never greet me so welcomingly! She really loves us..That >> is so nice. It is so evident even though she just can't bring >> herself to mouth the words"I love you Mum and Dad"- We have blessed >> evidence and that is so nice for us! >> >> I hope you are all well >> Maureen >> >> ----- Original Message ----- >> From: Family Voices >> To: familyvoices at inpress.pledgonline.com >> Sent: Sunday, May 24, 2009 8:13 PM >> Subject: Re: FV: What is inclusion? >> >> Thanks Jaquie . . . I appreciate your thoughts - I'm off on a >> holiday for two weeks so hopefully I'll come back with a peaceful >> and clearer mind! >> >> Cheers! >> J >> Anita O'Brien >> 6 Bogong Court >> Doncaster East 3109 >> Ph: 03 9841 8492 >> Mobile: 0416 064 045 >> email: anita.obrien at optusnet.com.au >> -----Original Message----- >> From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] >> Sent: Sunday, 24 May 2009 5:28 PM >> To: familyvoices at inpress.pledgonline.com >> Subject: Re: FV: What is inclusion? >> >> Hey Anita >> I just went through this myself. >> I don?t really have any sage advice, other than to say that the >> microboard model has been extended in North America to successfully >> cover situations like this one..ie so folks can be supported at >> home. That probably doesn?t help you directly as the model is still >> so much in development, but is there a way you could use the circle >> of friends idea to provide support to your mum in the new >> location....these issues we face with our kids are the same we all >> face at the times we most need support. Even if your mum needs to >> live in the ILU or somewhere with more supported, person centred >> planning can still help to make the service provision and her life >> as close as possible to what she wants and needs. Also Essential >> Lifestyle Planning is really good in this situation. >> I feel for you....it seems a cruel thing that us parents seem to >> commonly have to deal with our kids and our parents transitions at >> the same time. >> Let me know when you have downloaded Skype! >> Jaquie >> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com >> ] On Behalf Of Family Voices >> Sent: Thursday, 21 May 2009 2:29 PM >> To: familyvoices at inpress.pledgonline.com >> Subject: Re: FV: What is inclusion? >> Hi everyone, >> Loved the Kathie Snow statement AnitaS! >> Great story about Dan & Jack, Jo, of what can happen out there in >> the community, how Dan was the connector! These experiences do >> keep you going. >> Inclusion for the elderly - don't always want it. >> I have been spending much time caring for my 88-yr old mother in >> law, who has shifted unwillingly to an independent living unit in a >> retirement village. She needs quite a lot of support and we have >> some in place, but she really needs hostel care or nursing home. >> We tried to make the transition easier for her from home to ILU. >> It would have been great for her to stay in her own home and we >> have been supporting her to do so for nine years plus, but her >> vulnerability is such that we had no choice. Quite a few people >> she knows in the village but up to now she doesn't seem to want to >> mingle anymore than she has to. This situation seems to go against >> all I believe and work towards for Warren; Her choice would be her >> family home - & hide away. On top of this we have had a mountain >> of cleaning up to do to get her house ready for sale. If anyone >> has some sage advice I'm happy to listen. >> Thinking about getting on Skype myself - let you know how I go Jo. >> Warm wishes to everyone! >> xo >> AnitaO >> -----Original Message----- >> From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] >> Sent: Wednesday, 20 May 2009 10:51 PM >> To: familyvoices at inpress.pledgonline.com >> Subject: Re: FV: What is inclusion? >> Wow, I?m worn out thinking about all that travelling ? I hope it?ll >> be for a few weeks. Yes, it is a small world and what a great >> opportunity to catch up with Bruce to maybe get his reflections. >> Go Girl ? congratulations Rachel on getting the gig ? I looove Rock >> n Roll (am I on the right track). >> I?ll get dad to run a copy of the DVD for you (are you reading this >> dad?) ? not a heap on it but enough to enjoy and bring back those >> memories. >> Love Jo >> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com >> ] On Behalf Of Family Voices >> Sent: Wednesday, 20 May 2009 7:05 PM >> To: familyvoices at inpress.pledgonline.com >> Subject: Re: FV: What is inclusion? >> Hello Jo Good to hear you and remember our time at the Ho Down and >> of course other moments, How did the film come out. It would be >> good to see. >> We are off to Dublin in August and now not only will Rachel >> present a paper she is being invited to be part of the >> demonstration Rock and Roll team. Rather her than me but she seems >> happy with the task. there are nine other from the Down Syndrome >> group who have been involved for a long time so she has a bit of >> work to do. Still they seemed keen to have her after they asked her >> to go for a audition. She will also be performing in her two woman >> show in London so she is going to be busy. I am looking forward to >> catching up with Bridget as she son will both be there, Actually it >> will be great because I see from the program that Bruce will also >> be attending. We might just have our own little meeting and hear >> from him how he thought our visit went. It is a small world really >> isn't it. We will spend some time with my sister and her >> family england and then go to South Africa on the way home to see >> my Brothers family. >> You take care Miriam >> To: familyvoices at inpress.pledgonline.com >> Date: Wed, 20 May 2009 08:10:02 +0800 >> From: familyvoices at inpress.pledgonline.com >> Subject: Re: FV: What is inclusion? >> Thanks Miriam, it?s lovely to hear from you. When are you off on >> your trip ? must be coming up fast now. Hope all is well with you >> and the family, >> Love Jo >> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com >> ] On Behalf Of Family Voices >> Sent: Monday, 18 May 2009 7:46 PM >> To: familyvoices at inpress.pledgonline.com >> Subject: Re: FV: What is inclusion? >> Hi Jo I loved your happy weekend story. and the glimpse of you in >> your home. I hope the education stuff gets better for you, sadly it >> is such a long hard journey. You take care my warmest wishes Miriam >> >> > To: familyvoices at inpress.pledgonline.com >> > Date: Sun, 17 May 2009 18:48:14 +0800 >> > From: familyvoices at inpress.pledgonline.com >> > Subject: Re: FV: What is inclusion? >> > >> > Hi Everyone, >> > >> > It is 5pm West Aussie time and I have been sitting here with a >> loooovely >> > glass of Cab/Sav catching up on the conversation on FV learning >> from one of >> > my favourite sources. >> > >> > I am feeling pleasantly tired after being away to a Velor >> Microboard Weekend >> > at Fairbridge (just north of Pinjarra) with another amazing group >> of people >> > from all over the state learning more about inclusion and how to >> invite >> > others to be an integral part of our sons life. While I was >> learning this >> > stuff Dan was out having fun on the flying fox, abseiling, bush >> walking etc >> > supported by new friends..... >> > >> > Would like to share this story from the weekend, Dan and a young >> man, Jack >> > connected with one another on Saturday, I only discovered the >> connection >> > this morning when Jack walked by at breakfast and I saw Dan's arm >> shoot up >> > to give him a 'high five', Jack stopped, said good morning, how >> are you >> > mate, had a bit more of a chat and went off to have brekky. The >> abseiling >> > was happening after breakfast and after some discussion with the >> Coordinator >> > she approached Jack to ask if he would take Dan abseiling which >> he readily >> > agreed to. When lunch time came around, Dan arrived back at the >> hall with >> > Steve, minus Jack - I was wondering if everything went ok and >> decided to >> > follow up with him when I could. 15 minutes later he came in and >> sat down, >> > I thanked him for helping Dan out and he said "it's me that will >> be thanking >> > Dan", he explained that he had never abseiled before so prior to >> taking Dan >> > up he did a dummy run on his own, then he went up and down with >> Dan. After >> > everyone had had their turn the instructor offered Jack a weekend >> job, Jack >> > said he didn't know much about abseiling and the response was "if >> you can >> > support someone the way you did with Dan, talking to him all the >> way up and >> > down, helping him out where he needed, you know everything you >> need to >> > know". Jack was stoked (he's 16) and I was in awe of him being so >> > appreciative of Dan who helped him get the job. One day I'll stop >> being >> > surprised but right now I still get caught out with how there are >> others who >> > are so appreciative of our kids. Just wanted to share a warm and >> fuzzy - >> > they help me keep going with the other hard slog stuff we have to >> face - >> > thank goodness for these little gems. >> > >> > I have some education stuff happening (negative) but don't want >> to go into >> > it just now after my enjoyable weekend so will ask for some >> comments at >> > another time when I'm ready to tackle it.......wish it could be >> never! >> > Jo >> > >> > >> > >> > -----Original Message----- >> > From: familyvoices-bounces at inpress.pledgonline.com >> > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf >> Of Family >> > Voices >> > Sent: Sunday, 17 May 2009 2:39 PM >> > To: familyvoices at inpress.pledgonline.com >> > Subject: Re: FV: What is inclusion? >> > >> > HI Gina >> > Just been skyping with Anita. Wow is that scary I think the rule >> should be >> > only head for camera. >> > >> > I have also just gone to itunes and downloaded away the >> podcasts?? What are >> > they? >> > >> > Is anyone interested in skypeing? >> > Cheers Jane >> > >> > >> > Jane Warner/Hudson >> > >> > 07 46714737 >> > >> > >> > -----Original Message----- >> > From: familyvoices-bounces at inpress.pledgonline.com >> > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf >> Of Family >> > Voices >> > Sent: Sunday, May 17, 2009 1:32 PM >> > To: familyvoices at inpress.pledgonline.com >> > Subject: Re: FV: What is inclusion? >> > >> > Hi Jane >> > >> > Bearing in mind I haven't got P2Go at this stage but this is only >> as I >> > understand it... >> > >> > Q/ With the prolquo when I go into "about me" Can I put in stuff >> where >> > it >> > says "I go to the .....school?" ie Goondiwindi. If it is yes I will >> > then >> > work out how, I just don't want to be trying to work something >> out that >> > I >> > cant do. >> > >> > I believe you can add in your own words etc, you might have to >> fiddle >> > with the spelling, punctuation etc of Goondawindi to get the >> voice to >> > say it well enough for you to be happy with, ie it might need some >> > phonetic spelling, hyphens etc to work it out. In time you will >> work >> > out how to spell things to have the 'real voice' pronounce it well >> > enough. >> > >> > Q/Which manual or directions do you think are the simplest for >> > programming? >> > >> > Have you joined the P2Go group - there are some great parents who >> have >> > been beta testing it on that group and they are very keen to help >> out. >> > I posted the link a while back, but can resend if you need it. >> These >> > are people actually using it for their kids now, so would be >> great to >> > post your specific questions to them. The developers are very >> hands on >> > too. >> > >> > >> > Q/ Do you think it would be worth my while to get a Iphone for >> me? (I >> > saw >> > one on ebay that looked ok), Sarah have the Ipod so that I can >> learn to >> > use >> > it while she is. At some stage I would like her to use the phone >> just >> > not >> > sure if this is the right tool. Ie my thought for her was maybe a >> phone >> > with video connection to me so she can learn mum rings, I see her >> face >> > and >> > from their we learn answering and talk back. >> > >> > We haven't got the iPhone yet, but this was our plan... Shawn is >> off >> > contract with his phone at the moment having changed jobs and now >> for >> > the first time in his working career not provided a phone (shame >> about >> > that). So he was going to lock into a $49 or $59 capped plan to >> curb >> > his costs each month. Optus are currently offering iPhone plans >> with a >> > 8gig phone at this price so we believe we could sign up to one of >> those >> > plans, bring his number across to that plan, then move the sim >> card to >> > his Samsung phone an then just use the iPhone for Mac without a >> sim card >> > (or buy a cheap prepaid plan if we felt it was good as an emergency >> > phone). At least that way I could start developing options for >> its use, >> > start storing things I would normally store on a stepped switch >> > communicator and so on. >> > >> > I still need to find a way to switch adapt it, no-one has worked >> that >> > out yet - but I will keep trying. >> > >> > You would just have to check out the costs/capabilities of video >> calls >> > if that was a goal - I don't know much about that. Maybe skype is >> > available to use via the internet connections rather than phone >> calls - >> > not sure on that one. >> > >> > >> > In saying all this she is very good with the ipod I put hi five and >> > wiggles >> > on yesterday and it is a hit. >> > >> > There are also some great free PIXAR short films on iTunes you can >> > download - Mac loves them. Also check out the podcasts that are out >> > there. We found heaps of stories for Mac on podcasts (all free). >> Mac >> > has a very eclectic selection on his ipod. Jason Mraz is a big >> hit, he >> > likes to sing along, but he also likes some albums called 'Little >> > Voices' which is kids singing more contemporary and classic >> songs. He >> > seems to have ended his Tom Jones phase (now that the 'beer ad' >> is off >> > tv), still partial to some Kiss from time to time. He is a funny >> kid >> > really - he would be happy to have some big political speeches on >> there, >> > loves a big political statement on the news, he readily 'glaarrs' >> along >> > with the speaker - we are not sure whether he is 'for or agin' Mr >> Rudd >> > yet, but he certainly pipes up everytime Kevvy is banging on >> about stuff >> > on tv or radio. >> > >> > I am also going to see what I can learn about the Database >> program Bento >> > which can be used on the iPhone and see if a PODD style system >> could be >> > converted into that format. Just trying to find some workshops on >> PODD >> > systems somewhere in the country at the moment so I can learn more. >> > >> > Sorry more questions, where is the best place to get easy step by >> step >> > instructions to use ipod ie move programs on front page. >> > >> > Check out their website at http://www.proloquo2go.com/ >> > >> > >> > >> > Can I download a dvd to ipod direct or does everything have to go >> thru >> > itunes? >> > >> > I think you can just convert a DVD into ipod formats - there >> would be >> > software to do that depending on whether you are on PC or Mac. Some >> > might be freeware, some cheap, some expensive. Again, since I >> haven't >> > got the touch yet I can't be sure. >> > >> > Thanks Gina. You are such a inspirtation, I would love to get you >> to do >> > a >> > workshop for want of a better word in Goondiwindi. The young >> families I >> > work with could learn so much from you. >> > Anytime :-) >> > >> > Just a thought which I am sure you have covered, when you talk >> with the >> > school do you have someone beside you? >> > >> > I have my husband sitting beside me for all these meetings. I >> would not >> > go in there alone for love nor money. We sometimes don't think it >> is >> > fair on those we meet with. Shawn and I have been together now >> for 21 >> > years and know exactly where one another sits on issues so we can >> play >> > the "good cop/bad cop" roles pretty well, and where we know it is >> > unfair, is that we switch mid meeting if it is needed. Because >> Shawn >> > has been doing so much study on disability representation in the >> Media >> > etc he is great because he can just spout stuff, but also because >> he is >> > a journalist he is trained to question, so he turns their questions >> > round back at them - so we know we don't really play fair. We >> also don' >> > t go in for all the 'guilt' stuff we are meant to - guilt is soooo >> > over-rated :-). For example there are kids at the school who have >> been >> > denied access to other schools because they have 'behavioural and/ >> or >> > emotional type issues' (I know, shouldn't happen, shouldn't be >> denied >> > access anywhere, but it does) so our school does take them with >> open >> > arms, but these families are then sooooo grateful their kid has >> been >> > accepted they are not going to risk making waves and subsequently >> they >> > have been forced into this position of having to feel grateful >> and/or >> > disempowered by the system. So, when you don't do the guilt >> thing, I >> > guess it becomes a bit confronting for 'the system'. >> > >> > Hope it helps >> > >> > Feel free to contact me anytime if you think I can be useful. Mac's >> > birthday is in June - he might get his iPhone then. So excessive >> > providing such a thing to a 6yo but I honestly think it has the >> > potential to be such a fab tool for him I will just have to cope >> with >> > being an over indulgent parent (guilt free of course). >> > >> > Gina >> > >> > >> > >> > ________________________________ >> > >> > I am using the Free version of SPAMfighter >> > . >> > We are a community of 6 million users fighting spam. >> > SPAMfighter has removed 1588 of my spam emails to date. >> > The Professional version does not have this message. >> > >> > >> > No virus found in this incoming message. >> > Checked by AVG - www.avg.com >> > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: >> 05/16/09 >> > 17:05:00 >> > >> > >> > >> > >> Find car news, reviews and more Looking to change your car this year? >> Let ninemsn property help Looking to move somewhere new this winter? > > -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 20:30:41 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 25 May 2009 13:30:41 +1000 Subject: FV: What is inclusion? References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S> Message-ID: <172F386E13044A428262A61380719B82DA00EC@jcmail> That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > ________________________________ Find car news, reviews and more Looking to change your car this year? ________________________________ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 22:22:14 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 25 May 2009 15:22:14 +1000 Subject: FV: What is inclusion? In-Reply-To: <19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> Message-ID: <005001c9dcf8$c44ab400$c600a8c0@ANITA> Great to hear that Jill. We do sometimes assume they know what a certain step will mean and sometimes I find it needs to be repeated a few times. All the best in the search for Ben's place! xo J Anita O -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Monday, 25 May 2009 11:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Sun May 24 22:31:25 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 25 May 2009 15:31:25 +1000 Subject: FV: What is inclusion? References: <001901c9dcd5$30d044b0$c600a8c0@ANITA> Message-ID: MessageAnita have we made a catch up date yet? How does Thursday 11th June or Friday 12th sound? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:07 AM Subject: Re: FV: What is inclusion? Hi Maureen, That's a wonderful story of Lauren's growing independence - so encouraging and it must warm your heart as it does mine to hear it; As with Lauren, Warren certainly has his own way of showing us that he loves us. Catch up soooooooooooon. xo J Anita -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Monday, 25 May 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam ---------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > ---------------------------------------------------------------------- Find car news, reviews and more Looking to change your car this year? ---------------------------------------------------------------------- Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 25 16:35:46 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 26 May 2009 07:35:46 +0800 Subject: FV: What is inclusion? In-Reply-To: <172F386E13044A428262A61380719B82DA00EC@jcmail> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S> <172F386E13044A428262A61380719B82DA00EC@jcmail> Message-ID: <002a01c9dd91$87a12090$96e361b0$@net.au> This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 25 18:12:46 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 26 May 2009 11:12:46 +1000 Subject: FV: What is inclusion? In-Reply-To: Message-ID: <7s25l8$bj36ot@ipmail05.adl2.internode.on.net> Maureen So lovely to read your story of your holiday and your welcomed return. How exciting for her to have that independence - she sounds like she did really well. Sounds like more holidays on the horizon then? Regards Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! :-) Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1627 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Mon May 25 18:21:32 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 26 May 2009 11:21:32 +1000 Subject: FV: What is inclusion? In-Reply-To: References: <000f01c9dc58$47148650$c600a8c0@ANITA> Message-ID: <000c01c9dda0$4dd09170$e971b450$@com> Maureen - what a lovely story! Thanks for sharing it J Anita S From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Tue May 26 16:43:11 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 27 May 2009 07:43:11 +0800 Subject: FV: Sydney folks In-Reply-To: <002a01c9dd91$87a12090$96e361b0$@net.au> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S> <172F386E13044A428262A61380719B82DA00EC@jcmail> <002a01c9dd91$87a12090$96e361b0$@net.au> Message-ID: <001a01c9de5b$bb441040$31cc30c0$@net.au> Hi folks I'm in Sydney for a conference this Friday - Monday...I'm not sure how much spare time I'll have but I thought I'd flag it in case anyone wants to catch up for a coffee. My mobile # is 0407 223 234 Jaquie J -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Tue May 26 21:42:00 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 27 May 2009 14:42:00 +1000 Subject: FV: Early Intervention conference Message-ID: <003a01c9de85$7c1298e0$7437caa0$@Speed@mamre.org.au> Hi everyone, Has anyone heard back about the paper for the Early Intervention conference in Sydney? If it was successful, I'd like to send some parents down to it. If you haven't heard, when do you expect to? Thanks! Anita Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Tue May 26 22:49:12 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 27 May 2009 15:49:12 +1000 Subject: FV: Early Intervention conference In-Reply-To: <003a01c9de85$7c1298e0$7437caa0$@Speed@mamre.org.au> Message-ID: <7sm6mj$bkbjdq@ipmail05.adl2.internode.on.net> Hi Anita No response from them yet. I know they received my abstract. Hopefully it will be accepted (she says whilst hyperventilating at the thought of having to actually present, breath.. Breath.. Breath...) I think the indication from memory they would advise by June. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 2:42 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention conference Hi everyone, Has anyone heard back about the paper for the Early Intervention conference in Sydney? If it was successful, I'd like to send some parents down to it. If you haven't heard, when do you expect to? Thanks! Anita Anita Speed Coordinator, Parent Program cid:image001.jpg at 01C986D9.9CB06180 The information contained in the above e-mail message or messages (which includes any attachments) is confidential and may be legally privileged. It is intended only for the use of the person or entity to which it is addressed. If you are not the addressee any form of disclosure, copying, modification, distribution or any action taken or omitted in reliance on the information is unauthorised. Opinions contained in the message(s) do not necessarily reflect the opinions of Mamre Association Incorporated. If you received this communication in error, please notify the sender immediately and delete it from your computer system network. _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1627 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Wed May 27 04:51:11 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 27 May 2009 21:51:11 +1000 Subject: FV: What is inclusion? In-Reply-To: <002a01c9dd91$87a12090$96e361b0$@net.au> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail> <002a01c9dd91$87a12090$96e361b0$@net.au> Message-ID: The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! :-) Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Wed May 27 17:10:40 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 10:10:40 +1000 Subject: FV: What is inclusion? References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au> Message-ID: <172F386E13044A428262A61380719B82DA02B0@jcmail> Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held...still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else .....busy, and it's now winter YUCK !!!!! ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! :-) Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > ________________________________ Find car news, reviews and more Looking to change your car this year? ________________________________ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Wed May 27 17:20:23 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 10:20:23 +1000 Subject: FV: What is inclusion? In-Reply-To: <172F386E13044A428262A61380719B82DA02B0@jcmail> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> Message-ID: <002d01c9df2a$190bbd30$4b233790$@com.au> Hi Libby, Interesting comment about Self Managed Option. I am very aware of your comments and I am hopefully going to achieve having our Support Workers on the job fostering unpaid community involvement. That's our plan and I would really like to make it work. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Wed May 27 18:16:02 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 11:16:02 +1000 Subject: FV: What is inclusion? References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> <002d01c9df2a$190bbd30$4b233790$@com.au> Message-ID: <0D52E826C63841F3BA49D0246D215D29@D8XYGK1S> Hello Helen, nice to know your computer hasn't floated away in the floods we see in your area. Hope you are OK. Some interesting reflections around Paid and unpaid support. Lauren has had paid support at her job for some time and then we removed it as she was learning to cope on her own. Once we removed the support a whole lot of things happened for her. It gave her power to make her own decisions and she felt the same as other employees. We didn't realise we were holding her back. An example of this was...At her Christmas break, in the past I would have asked the support worker to organise Lauren's holiday time off and to find out when she was expected to re start..Without the support Lauren organised it all herself. Diary and all! I was amazed as I really thought she wouldn't be able to do this. Lots of other responsibilities came into place after that. She had made such good contacts in the work place, that it all just slotted into place once the support was removed. But what this also showed us, was that the support worker had been chipping away at letting Lauren's work colleagues assist her and make friends with her and build a working community around her for when she stepped away. Perfect as far as we were concerned. That's how good support should work for Lauren. Another interesting aspect of her support is.. Now she is on Direct Payments and we are part of the pilot for Direct Employment. Lauren has support one day a week for a few hours. She claims she is "the boss"and her support worker works for her. It is an interesting aspect of support but it has given Lauren all the control and power to be "the boss!" - ('m never quite sure who is bossing who, but it is interesting!) Cheers Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Thursday, May 28, 2009 10:20 AM Subject: Re: FV: What is inclusion? Hi Libby, Interesting comment about Self Managed Option. I am very aware of your comments and I am hopefully going to achieve having our Support Workers on the job fostering unpaid community involvement. That's our plan and I would really like to make it work. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ ------------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! ------------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ ------------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam ---------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > ---------------------------------------------------------------------- Find car news, reviews and more Looking to change your car this year? ---------------------------------------------------------------------- Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Wed May 27 18:33:01 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 11:33:01 +1000 Subject: FV: What is inclusion? In-Reply-To: <0D52E826C63841F3BA49D0246D215D29@D8XYGK1S> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> <002d01c9df2a$190bbd30$4b233790$@com.au> <0D52E826C63841F3BA49D0246D215D29@D8XYGK1S> Message-ID: <003901c9df34$3e7eca80$bb7c5f80$@com.au> Hi Maureen, My computer was just about the only thing that has not floated away. Nice to read your thoughts, that is inspiration for me to continue in the direction that we are heading. Hope you are well. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 11:16 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Helen, nice to know your computer hasn't floated away in the floods we see in your area. Hope you are OK. Some interesting reflections around Paid and unpaid support. Lauren has had paid support at her job for some time and then we removed it as she was learning to cope on her own. Once we removed the support a whole lot of things happened for her. It gave her power to make her own decisions and she felt the same as other employees. We didn't realise we were holding her back. An example of this was...At her Christmas break, in the past I would have asked the support worker to organise Lauren's holiday time off and to find out when she was expected to re start..Without the support Lauren organised it all herself. Diary and all! I was amazed as I really thought she wouldn't be able to do this. Lots of other responsibilities came into place after that. She had made such good contacts in the work place, that it all just slotted into place once the support was removed. But what this also showed us, was that the support worker had been chipping away at letting Lauren's work colleagues assist her and make friends with her and build a working community around her for when she stepped away. Perfect as far as we were concerned. That's how good support should work for Lauren. Another interesting aspect of her support is.. Now she is on Direct Payments and we are part of the pilot for Direct Employment. Lauren has support one day a week for a few hours. She claims she is "the boss"and her support worker works for her. It is an interesting aspect of support but it has given Lauren all the control and power to be "the boss!" - ('m never quite sure who is bossing who, but it is interesting!) Cheers Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Thursday, May 28, 2009 10:20 AM Subject: Re: FV: What is inclusion? Hi Libby, Interesting comment about Self Managed Option. I am very aware of your comments and I am hopefully going to achieve having our Support Workers on the job fostering unpaid community involvement. That's our plan and I would really like to make it work. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Wed May 27 19:08:18 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 12:08:18 +1000 Subject: FV: What is inclusion? References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> <002d01c9df2a$190bbd30$4b233790$@com.au><0D52E826C63841F3BA49D0246D215D29@D8XYGK1S> <003901c9df34$3e7eca80$bb7c5f80$@com.au> Message-ID: <172F386E13044A428262A61380719B82DA02E9@jcmail> Hi sorry, I haven't meant my comments to engender a feeling that people are on the wrong track or it is wrong to have support workers .... apologies. Actually it's more a comment about systems of support and how, even though we feel there is a lot of innovation in the way our support framework operates around Matthew, we should always 'imagine better' (as Kendrick says). This is what is so great about hearing people like Bruce talk - could there be another way, could we use our funds in another way and try this. It's something that we haven't yet been able to achieve very deeply for Matthew, but like to always remain critical and non-complacent about where we have reached, or to think that this is the pinnacle of innovation. I think this is a very important role to play in keeping Matthew's interests in mind (rather than mine which can be clouded by things like the fear and hard work of it all). One step has been to actively tackle the issue of when Matthew could be on his own. Even to ask this question and then to turn it into a statement "Matthew can be on his own" (and when would it be safe to start this experiment) is a major shift. Pretty fuckin (excuse me) scary though. Like Matthew has NEVER in his life been without someone in vicinty of him (no wonder he so longs and loves to go to bed at night! when is he finally and truly alone). i think what I'm saying is that often we are taught not to start with these (small and potentially difficult and time consuming) issues and the 'support worker' model is part of that and just seems to overpower it. The other thing is that the 'connecting' and 'building' work that Maureen talks about is a skill that takes a particular person. In my experience very few people have been good at it in Matthew's life. So we are always spending a lot of energy with people telling them, helping them understand this role. BUT only few people ever really get it. This doesn't make those others bad people, just not the right people for this job. Then this also makes me think - where is a better place to be putting this developmental energy? Where is the place that this energy will make a difference? Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 11:33 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Maureen, My computer was just about the only thing that has not floated away. Nice to read your thoughts, that is inspiration for me to continue in the direction that we are heading. Hope you are well. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 11:16 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Helen, nice to know your computer hasn't floated away in the floods we see in your area. Hope you are OK. Some interesting reflections around Paid and unpaid support. Lauren has had paid support at her job for some time and then we removed it as she was learning to cope on her own. Once we removed the support a whole lot of things happened for her. It gave her power to make her own decisions and she felt the same as other employees. We didn't realise we were holding her back. An example of this was...At her Christmas break, in the past I would have asked the support worker to organise Lauren's holiday time off and to find out when she was expected to re start..Without the support Lauren organised it all herself. Diary and all! I was amazed as I really thought she wouldn't be able to do this. Lots of other responsibilities came into place after that. She had made such good contacts in the work place, that it all just slotted into place once the support was removed. But what this also showed us, was that the support worker had been chipping away at letting Lauren's work colleagues assist her and make friends with her and build a working community around her for when she stepped away. Perfect as far as we were concerned. That's how good support should work for Lauren. Another interesting aspect of her support is.. Now she is on Direct Payments and we are part of the pilot for Direct Employment. Lauren has support one day a week for a few hours. She claims she is "the boss"and her support worker works for her. It is an interesting aspect of support but it has given Lauren all the control and power to be "the boss!" - ('m never quite sure who is bossing who, but it is interesting!) Cheers Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Thursday, May 28, 2009 10:20 AM Subject: Re: FV: What is inclusion? Hi Libby, Interesting comment about Self Managed Option. I am very aware of your comments and I am hopefully going to achieve having our Support Workers on the job fostering unpaid community involvement. That's our plan and I would really like to make it work. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held...still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else .....busy, and it's now winter YUCK !!!!! ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [ mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [ mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > ________________________________ Find car news, reviews and more Looking to change your car this year? ________________________________ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: image001.png URL: From familyvoices at inpress.pledgonline.com Wed May 27 19:13:54 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 12:13:54 +1000 Subject: FV: Sydney folks References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S> <172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au> <001a01c9de5b$bb441040$31cc30c0$@net.au> Message-ID: <172F386E13044A428262A61380719B82DA02EB@jcmail> Hi Jaquie. On Monday I will be around the eastern suburbs/city at around 7pm. Too late? Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:43 AM To: familyvoices at inpress.pledgonline.com Subject: FV: Sydney folks Hi folks I'm in Sydney for a conference this Friday - Monday...I'm not sure how much spare time I'll have but I thought I'd flag it in case anyone wants to catch up for a coffee. My mobile # is 0407 223 234 Jaquie J -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Wed May 27 19:25:21 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 12:25:21 +1000 Subject: FV: What is inclusion? In-Reply-To: <172F386E13044A428262A61380719B82DA02E9@jcmail> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> <002d01c9df2a$190bbd30$4b233790$@com.au><0D52E826C63841F3BA49D0246D215D29@D8XYGK1S> <003901c9df34$3e7eca80$bb7c5f80$@com.au> <172F386E13044A428262A61380719B82DA02E9@jcmail> Message-ID: <005e01c9df3b$8edf6780$ac9e3680$@com.au> Hi Libby, I didn't feel that at all, I just don't have time to elaborate on things a lot. I was simply feeling quite good that we are already aware of this trap. I know that we have to settle for less than perfect sometimes but it never makes me stop trying to work towards a better life for Shari. I'm sure I will be saying this when I'm 90. I have enjoyed reading your input as I feel that Shari is probably in a somewhat similar age bracket to Matthew and I find that really helpful. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 12:08 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi sorry, I haven't meant my comments to engender a feeling that people are on the wrong track or it is wrong to have support workers .... apologies. Actually it's more a comment about systems of support and how, even though we feel there is a lot of innovation in the way our support framework operates around Matthew, we should always 'imagine better' (as Kendrick says). This is what is so great about hearing people like Bruce talk - could there be another way, could we use our funds in another way and try this. It's something that we haven't yet been able to achieve very deeply for Matthew, but like to always remain critical and non-complacent about where we have reached, or to think that this is the pinnacle of innovation. I think this is a very important role to play in keeping Matthew's interests in mind (rather than mine which can be clouded by things like the fear and hard work of it all). One step has been to actively tackle the issue of when Matthew could be on his own. Even to ask this question and then to turn it into a statement "Matthew can be on his own" (and when would it be safe to start this experiment) is a major shift. Pretty fuckin (excuse me) scary though. Like Matthew has NEVER in his life been without someone in vicinty of him (no wonder he so longs and loves to go to bed at night! when is he finally and truly alone). i think what I'm saying is that often we are taught not to start with these (small and potentially difficult and time consuming) issues and the 'support worker' model is part of that and just seems to overpower it. The other thing is that the 'connecting' and 'building' work that Maureen talks about is a skill that takes a particular person. In my experience very few people have been good at it in Matthew's life. So we are always spending a lot of energy with people telling them, helping them understand this role. BUT only few people ever really get it. This doesn't make those others bad people, just not the right people for this job. Then this also makes me think - where is a better place to be putting this developmental energy? Where is the place that this energy will make a difference? Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 11:33 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Maureen, My computer was just about the only thing that has not floated away. Nice to read your thoughts, that is inspiration for me to continue in the direction that we are heading. Hope you are well. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 11:16 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Helen, nice to know your computer hasn't floated away in the floods we see in your area. Hope you are OK. Some interesting reflections around Paid and unpaid support. Lauren has had paid support at her job for some time and then we removed it as she was learning to cope on her own. Once we removed the support a whole lot of things happened for her. It gave her power to make her own decisions and she felt the same as other employees. We didn't realise we were holding her back. An example of this was...At her Christmas break, in the past I would have asked the support worker to organise Lauren's holiday time off and to find out when she was expected to re start..Without the support Lauren organised it all herself. Diary and all! I was amazed as I really thought she wouldn't be able to do this. Lots of other responsibilities came into place after that. She had made such good contacts in the work place, that it all just slotted into place once the support was removed. But what this also showed us, was that the support worker had been chipping away at letting Lauren's work colleagues assist her and make friends with her and build a working community around her for when she stepped away. Perfect as far as we were concerned. That's how good support should work for Lauren. Another interesting aspect of her support is.. Now she is on Direct Payments and we are part of the pilot for Direct Employment. Lauren has support one day a week for a few hours. She claims she is "the boss"and her support worker works for her. It is an interesting aspect of support but it has given Lauren all the control and power to be "the boss!" - ('m never quite sure who is bossing who, but it is interesting!) Cheers Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Thursday, May 28, 2009 10:20 AM Subject: Re: FV: What is inclusion? Hi Libby, Interesting comment about Self Managed Option. I am very aware of your comments and I am hopefully going to achieve having our Support Workers on the job fostering unpaid community involvement. That's our plan and I would really like to make it work. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: not available URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Wed May 27 19:33:44 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 12:33:44 +1000 Subject: FV: What is inclusion? References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> <002d01c9df2a$190bbd30$4b233790$@com.au><0D52E826C63841F3BA49D0246D215D29@D8XYGK1S> <003901c9df34$3e7eca80$bb7c5f80$@com.au><172F386E13044A428262A61380719B82DA02E9@jcmail> <005e01c9df3b$8edf6780$ac9e3680$@com.au> Message-ID: <172F386E13044A428262A61380719B82DA02F3@jcmail> No worries Helen.... :) I really enjoy reading these conversations too. Really some of the best learning i have had in a long time because they have been conversations about the practical implications of pushing the limits of what we understand by 'inclusion'. Just wish i could sift through some of them a bit better or that they didn't all seem to come at once into my email box!!!!!!!!!! Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 12:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Libby, I didn't feel that at all, I just don't have time to elaborate on things a lot. I was simply feeling quite good that we are already aware of this trap. I know that we have to settle for less than perfect sometimes but it never makes me stop trying to work towards a better life for Shari. I'm sure I will be saying this when I'm 90. I have enjoyed reading your input as I feel that Shari is probably in a somewhat similar age bracket to Matthew and I find that really helpful. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 12:08 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi sorry, I haven't meant my comments to engender a feeling that people are on the wrong track or it is wrong to have support workers .... apologies. Actually it's more a comment about systems of support and how, even though we feel there is a lot of innovation in the way our support framework operates around Matthew, we should always 'imagine better' (as Kendrick says). This is what is so great about hearing people like Bruce talk - could there be another way, could we use our funds in another way and try this. It's something that we haven't yet been able to achieve very deeply for Matthew, but like to always remain critical and non-complacent about where we have reached, or to think that this is the pinnacle of innovation. I think this is a very important role to play in keeping Matthew's interests in mind (rather than mine which can be clouded by things like the fear and hard work of it all). One step has been to actively tackle the issue of when Matthew could be on his own. Even to ask this question and then to turn it into a statement "Matthew can be on his own" (and when would it be safe to start this experiment) is a major shift. Pretty fuckin (excuse me) scary though. Like Matthew has NEVER in his life been without someone in vicinty of him (no wonder he so longs and loves to go to bed at night! when is he finally and truly alone). i think what I'm saying is that often we are taught not to start with these (small and potentially difficult and time consuming) issues and the 'support worker' model is part of that and just seems to overpower it. The other thing is that the 'connecting' and 'building' work that Maureen talks about is a skill that takes a particular person. In my experience very few people have been good at it in Matthew's life. So we are always spending a lot of energy with people telling them, helping them understand this role. BUT only few people ever really get it. This doesn't make those others bad people, just not the right people for this job. Then this also makes me think - where is a better place to be putting this developmental energy? Where is the place that this energy will make a difference? Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 11:33 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Maureen, My computer was just about the only thing that has not floated away. Nice to read your thoughts, that is inspiration for me to continue in the direction that we are heading. Hope you are well. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 11:16 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Helen, nice to know your computer hasn't floated away in the floods we see in your area. Hope you are OK. Some interesting reflections around Paid and unpaid support. Lauren has had paid support at her job for some time and then we removed it as she was learning to cope on her own. Once we removed the support a whole lot of things happened for her. It gave her power to make her own decisions and she felt the same as other employees. We didn't realise we were holding her back. An example of this was...At her Christmas break, in the past I would have asked the support worker to organise Lauren's holiday time off and to find out when she was expected to re start..Without the support Lauren organised it all herself. Diary and all! I was amazed as I really thought she wouldn't be able to do this. Lots of other responsibilities came into place after that. She had made such good contacts in the work place, that it all just slotted into place once the support was removed. But what this also showed us, was that the support worker had been chipping away at letting Lauren's work colleagues assist her and make friends with her and build a working community around her for when she stepped away. Perfect as far as we were concerned. That's how good support should work for Lauren. Another interesting aspect of her support is.. Now she is on Direct Payments and we are part of the pilot for Direct Employment. Lauren has support one day a week for a few hours. She claims she is "the boss"and her support worker works for her. It is an interesting aspect of support but it has given Lauren all the control and power to be "the boss!" - ('m never quite sure who is bossing who, but it is interesting!) Cheers Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Thursday, May 28, 2009 10:20 AM Subject: Re: FV: What is inclusion? Hi Libby, Interesting comment about Self Managed Option. I am very aware of your comments and I am hopefully going to achieve having our Support Workers on the job fostering unpaid community involvement. That's our plan and I would really like to make it work. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held...still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else .....busy, and it's now winter YUCK !!!!! ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [ mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [ mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [ mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > ________________________________ Find car news, reviews and more Looking to change your car this year? ________________________________ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: image001.png URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/png Size: 5049 bytes Desc: image002.png URL: From familyvoices at inpress.pledgonline.com Wed May 27 20:17:14 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 13:17:14 +1000 Subject: FV: What is inclusion? In-Reply-To: <172F386E13044A428262A61380719B82DA02F3@jcmail> Message-ID: <7sm6mj$bl8m09@ipmail05.adl2.internode.on.net> Hi Libby Have you set up a rule to move all the Family Voices emails into their own folder? That makes management much easier. Let me know if you want instructions I can repost them. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? No worries Helen.... :) I really enjoy reading these conversations too. Really some of the best learning i have had in a long time because they have been conversations about the practical implications of pushing the limits of what we understand by 'inclusion'. Just wish i could sift through some of them a bit better or that they didn't all seem to come at once into my email box!!!!!!!!!! Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 12:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Libby, I didn't feel that at all, I just don't have time to elaborate on things a lot. I was simply feeling quite good that we are already aware of this trap. I know that we have to settle for less than perfect sometimes but it never makes me stop trying to work towards a better life for Shari. I'm sure I will be saying this when I'm 90. I have enjoyed reading your input as I feel that Shari is probably in a somewhat similar age bracket to Matthew and I find that really helpful. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 12:08 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi sorry, I haven't meant my comments to engender a feeling that people are on the wrong track or it is wrong to have support workers .... apologies. Actually it's more a comment about systems of support and how, even though we feel there is a lot of innovation in the way our support framework operates around Matthew, we should always 'imagine better' (as Kendrick says). This is what is so great about hearing people like Bruce talk - could there be another way, could we use our funds in another way and try this. It's something that we haven't yet been able to achieve very deeply for Matthew, but like to always remain critical and non-complacent about where we have reached, or to think that this is the pinnacle of innovation. I think this is a very important role to play in keeping Matthew's interests in mind (rather than mine which can be clouded by things like the fear and hard work of it all). One step has been to actively tackle the issue of when Matthew could be on his own. Even to ask this question and then to turn it into a statement "Matthew can be on his own" (and when would it be safe to start this experiment) is a major shift. Pretty fuckin (excuse me) scary though. Like Matthew has NEVER in his life been without someone in vicinty of him (no wonder he so longs and loves to go to bed at night! when is he finally and truly alone). i think what I'm saying is that often we are taught not to start with these (small and potentially difficult and time consuming) issues and the 'support worker' model is part of that and just seems to overpower it. The other thing is that the 'connecting' and 'building' work that Maureen talks about is a skill that takes a particular person. In my experience very few people have been good at it in Matthew's life. So we are always spending a lot of energy with people telling them, helping them understand this role. BUT only few people ever really get it. This doesn't make those others bad people, just not the right people for this job. Then this also makes me think - where is a better place to be putting this developmental energy? Where is the place that this energy will make a difference? Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 11:33 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Maureen, My computer was just about the only thing that has not floated away. Nice to read your thoughts, that is inspiration for me to continue in the direction that we are heading. Hope you are well. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 11:16 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Helen, nice to know your computer hasn't floated away in the floods we see in your area. Hope you are OK. Some interesting reflections around Paid and unpaid support. Lauren has had paid support at her job for some time and then we removed it as she was learning to cope on her own. Once we removed the support a whole lot of things happened for her. It gave her power to make her own decisions and she felt the same as other employees. We didn't realise we were holding her back. An example of this was...At her Christmas break, in the past I would have asked the support worker to organise Lauren's holiday time off and to find out when she was expected to re start..Without the support Lauren organised it all herself. Diary and all! I was amazed as I really thought she wouldn't be able to do this. Lots of other responsibilities came into place after that. She had made such good contacts in the work place, that it all just slotted into place once the support was removed. But what this also showed us, was that the support worker had been chipping away at letting Lauren's work colleagues assist her and make friends with her and build a working community around her for when she stepped away. Perfect as far as we were concerned. That's how good support should work for Lauren. Another interesting aspect of her support is.. Now she is on Direct Payments and we are part of the pilot for Direct Employment. Lauren has support one day a week for a few hours. She claims she is "the boss"and her support worker works for her. It is an interesting aspect of support but it has given Lauren all the control and power to be "the boss!" - ('m never quite sure who is bossing who, but it is interesting!) Cheers Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Thursday, May 28, 2009 10:20 AM Subject: Re: FV: What is inclusion? Hi Libby, Interesting comment about Self Managed Option. I am very aware of your comments and I am hopefully going to achieve having our Support Workers on the job fostering unpaid community involvement. That's our plan and I would really like to make it work. Cheers Helen Durbidge Property Sales Kirkland Real Estate 9/8 Bowra St Urunga NSW 2455 Email - helen at kirklandrealestate.com.au www.kirklandrealestate.com.au Phone: 66556167 or 0401805298 From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 28 May 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! :-) Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1627 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/gif Size: 3210 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Thu May 28 06:25:33 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 28 May 2009 09:25:33 -0400 Subject: FV: What is inclusion? In-Reply-To: <172F386E13044A428262A61380719B82DA02B0@jcmail> References: <000f01c9dc58$47148650$c600a8c0@ANITA> <19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S> <172F386E13044A428262A61380719B82DA00EC@jcmail> <002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> Message-ID: <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> Hallo everyone, I am a parent of a son who had a head injury many years ago and did not come up through the child raising times and so I find your conversation very enlightening. I now have a problem. I am travelling in Canada, using other people's computers, and wanted to forward the conversations about Facilitated Communication to someone I met this week. However, somehow I lost it. Would someone please forward those particular conversations to me again so that I may send them on to her. Regards, Brenda On Wed, May 27, 2009 at 8:10 PM, Family Voices < familyvoices at inpress.pledgonline.com> wrote: > Another aspect of this we have faced is the absolutely IMPLICIT > 'dependence learning' that is done through the very act of having support > workers. This is so deep in Matthew, and I feel quite certain at this stage > that this is an inherent aspect of the 'support worker' model. Matthew turns > to the person he is with and puts his hand to his mouth (a morph of the > drink/eat sign). This sign is a decision-making sign and one that he > initiates. It's fabulous that he initiates it (decision-making in practice) > but it quickly becomes a handing-over of power (that he also initiates). > It's also the fact that he does it in the first place. Depending on the > context, it variously means > > - tell me what is happening next > - where are we going > - I want something > - who is coming after you bugger off (and are they going to be more > exciting that you my boring sister?!) > > As you can see, depending on how you respond you can very easily become the > locus of control. > > Why doesn't Matthew make a decision - eg I want a drink - a go initiate > it? He's capable of this with assistance (this was meant as a > rhetorical/theoretical question). Instead he's learned so subtely and > powerfully over the years that the people who come in to his home are > responsible for this. > > I'm using this as an example, not really looking for suggestions here about > others ways Matthew could communicate - we're really working on this. > > I think what I wanted to raise are actually issues around involvement of *paid > people/unpaid people* - I have seen this as another topic of discussion > here > > So much of what families/individuals are conditioned around is the need for > paid support. Families (including ours), leap to it. However we baulk > (including ours), are fearful, worried, don't think it could be possible etc > around the unpaid stuff. We're taught (professional gift model) that this is > what is needed. I look at the self-managed community participation options > in NSW for example, where the work of families seems very quickly to be > around hiring support workers to assist the young person in their > post-school pursuits. It becomes like a vicious cycle - the more we get > caught up in managing the paid system the easier it is to stay away from the > (harder) work of the unpaid stuff. > > I have found in our accommodation agreement/arrangement with Matthew's > service provider that we too get driven by this. His budget is there to use > to hire support workers isn't it? > > It was therefore very interesting to hear Bruce Uditsky from Alberta, > Canada talk at Family Advocacy conference a couple of years ago about this - > their response has been to work on a number of projects that seek to > systemically develop more natural supports. For example their partnership > with Rotary where support on the job is built through co-workers. > > My example above is to talk about the potentially powerful impact of this > on people and their decision-making capacity. There are many things we can > do to help put power back into Matthew's hands, but many of these are really > just fiddling, cos they don't get at the root, which is the very presence of > the person whose job it is 'to help' (no matter how empowering they are in > the practice of this role). > > > *Libby * > *_________________________________* > > > ------------------------------ > *From:* familyvoices-bounces at inpress.pledgonline.com [mailto: > familyvoices-bounces at inpress.pledgonline.com] *On Behalf Of *Family Voices > *Sent:* Wednesday, 27 May 2009 9:51 PM > > *To:* familyvoices at inpress.pledgonline.com > *Subject:* Re: FV: What is inclusion? > > The response we are accustomed to is ?I don?t know? when she absolutely > does know. I think this comes from a place of wanting to please, not > wanting to be to told no and also wanting to get the answer right. > Depending on the complexity of the question we now give her ridiculous > options like cat food on toast to push her to articulate her choice or > reframing the question/breaking it down in sequential order to assist > understanding and then decision making. We are also very aware that if Jos > makes a clear choice that we honor that (as much as we can, education about > good food choices or bed times if very tired etc) even if it really puts us > out otherwise her choice making is really redundant, leading to more I don?t > know. The other aspect is that we know her well and understand her > reluctance to make decisions however if she were in a service world it would > simply move on and make decisions on her behalf that suited the service not > her as a person. We are really keen to encourage her independent decision > making as she will need it in the future to maintain her personal > independence and protect her form being, excuse me, fucked around. It?s > interesting that what is a big ask for Jos would be just a natural > occurrence for the other kids. Todd and I are the moderators of this and we > try to always be mindful that our power over her life is much more profound > in good ways and also in not so good if were not careful to keep her > interests at the forefront of our minds. > > > > Megs > > > > Offer on house accepted, meeting with new school held?still thinking, > geriatric dog survived kennel experience (just), eldest child home from > England tomorrow, middle child has new work placement at child care centre, > youngest child 15 on Friday, just like everyone else ?..busy, and it?s now > winter YUCK !!!!! > > > ------------------------------ > > *From:* familyvoices-bounces at inpress.pledgonline.com [mailto: > familyvoices-bounces at inpress.pledgonline.com] *On Behalf Of *Family Voices > *Sent:* Tuesday, 26 May 2009 9:36 AM > *To:* familyvoices at inpress.pledgonline.com > *Subject:* Re: FV: What is inclusion? > > > > This is all so true...we all fill in the gaps of what we hear with our own > assumptions. We have a terrific service dude here in Perth who works with > the vela families who always reminds us that everyone?s default answer is > always ?no?...until we have enough information. > > > > One of eli?s friends years ago used to routinely refuse to sleepover. I > assumed, in my wounded heart maternal fashion, for about a year that he said > no because he didn?t really want to be around eli that much because he was > too weird. When i got around to asking him, he said...i?m planning to live > with eli when i move out of home but i don?t think i am ready to look after > him all by myself yet. This young man was 13`at the time, and for some > reason he had assumed that a sleepover meant me and Darryl wouldn?t be here! > We?ve had many sleepovers since and even now, 4 years later, some. Weekends > liam almost lives here. > > > > One strategy we?ve been using with one family is to build up an image of > adult life using favourite movies and tv shows. We have a young woman at > present with some challenges around adult behaviour, and are using her > favourite tv series ?Friends? to help her to identify adult vs childish ways > of being. So far it has been very successful. I think this process of > developing an adult identity is comlex for all of us. > > > > We?ve had some awesome help with this from the international men?s group > Mankind Project who eli is in the process of joining. I recommend them from > what i have seen so far to anyone with sons who are transitioning into an > adult male identity, but they have been profound and magnificent in their > welcome and inclusion of eli so far. Check out the website: > > > > http://www.mkp.org/ > > > > Jaquie > > > > > > > > *From:* familyvoices-bounces at inpress.pledgonline.com [mailto: > familyvoices-bounces at inpress.pledgonline.com] *On Behalf Of *Family Voices > *Sent:* Monday, 25 May 2009 11:31 AM > *To:* familyvoices at inpress.pledgonline.com > *Subject:* Re: FV: What is inclusion? > > > > That's really interesting Jill and has really made me think! Quite a ground > breaking thing - so simple yet so easily missed. This has really made me > think about my language and how we assume so much in our conversations in > life > > > > *Libby * > > *_________________________________* > > > > > ------------------------------ > > *From:* familyvoices-bounces at inpress.pledgonline.com [mailto: > familyvoices-bounces at inpress.pledgonline.com] *On Behalf Of *Family Voices > *Sent:* Monday, 25 May 2009 11:49 AM > *To:* familyvoices at inpress.pledgonline.com > *Subject:* Re: FV: What is inclusion? > > Hi Jill, Interesting that the wording was the hold back. I did ask Lauren > if she was lonely and was our home too big for her to manage. But she just > looked at me vaguely and said no. Maybe I should word it differently. I > don't want her to feel she HAS to move away from her security either. It > might take years for us to get to a place where she lives independently of > us, but I feel we have started her thinking she can do it. > > When are you going to South America Jill? > > Maureen > > ----- Original Message ----- > > *From:* Family Voices > > *To:* familyvoices at inpress.pledgonline.com > > *Sent:* Monday, May 25, 2009 11:37 AM > > *Subject:* Re: FV: What is inclusion? > > > > Hi Maureen > > Great news about Lauren's 'holiday'! I can relate to it so well as it was > the same for me with Ben when I returned from Canada. Apart from his solo > experience whilst I was in Canada, I eventually worked out what was adding > to his concern re living independently. I used to say to him "wouldn't you > like to live by yourself?" or something similar and just lately twigged that > he was taking this literally and thinking that he would be just in the house > by himself with nothing else happening! When I thought to add that he would > still go to work, go out with friends, visit me etc, his whole attitude > changed. Silly me, thought he was a mind reader! Ben has now agreed to > having a look at some places for himself, so we will gradually do some open > inspections. More holidays on the horizon for you! > > Regards > > Jill > > > > > > Hello everyone, > > Life has been busy here and I have been reading all the contributions and > not participating. Just reading.. > > "Moving Mum"can be as stressful as thinking about moving our young ones > into places of their own. As I have a 91 y.o. Mum who lives in an retirement > apartment and is very independent, but she can't drive or attend medical > appointments without some assistance and so I (and others) are always there > for her. We are a huge family, and we love sharing the responsibility of > Mum, but for others like Anita, who are "IT" - the problems can't be shared > - there is a huge responsibility. > > There is such a close parallel between disability and aged care. I often > see the same issues arise between Mum and Lauren. Age is not the barrier! > > > > My good story for the day is.. > > Murdoch and I went to Hobart for three nights of respite and golf.. We ate > too much and drank too much and went to the casino and the horse track and > generally enjoyed ourselves. > > All this was possible because we "bit the bullet"and left Lauren at home - > ALONE!! > > I had prepared a few meals in advance. She ordered a Pizza to share with a > friend who came over and stayed on Saturday night. They took themselves out > to brunch on Sunday morning and she managed her life and recreation very > well without us.. We are delighted to tell you we are > > very excited about her independence, but more so, she was so delighted to > see us!! > > > > Aren't we lucky? To be greeted so lovingly and warmly when we drove in the > garage and her little laughing face was at the door. My other kids never > greet me so welcomingly! She really loves us..That is so nice. It is so > evident even though she just can't bring herself to mouth the words"I love > you Mum and Dad"- We have blessed evidence and that is so nice for us! > > > > I hope you are all well > > Maureen > > > > ----- Original Message ----- > > *From:* Family Voices > > *To:* familyvoices at inpress.pledgonline.com > > *Sent:* Sunday, May 24, 2009 8:13 PM > > *Subject:* Re: FV: What is inclusion? > > > > Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for > two weeks so hopefully I'll come back with a peaceful and clearer mind! > > > > Cheers! > > J > > Anita O'Brien > > 6 Bogong Court > > Doncaster East 3109 > > Ph: 03 9841 8492 > > Mobile: 0416 064 045 > > email: anita.obrien at optusnet.com.au > > -----Original Message----- > *From:* Family Voices [mailto:familyvoices at inpress.pledgonline.com > ] > *Sent:* Sunday, 24 May 2009 5:28 PM > *To:* familyvoices at inpress.pledgonline.com > *Subject:* Re: FV: What is inclusion? > > Hey Anita > > I just went through this myself. > > I don?t really have any sage advice, other than to say that the microboard > model has been extended in North America to successfully cover situations > like this one..ie so folks can be supported at home. That probably doesn?t > help you directly as the model is still so much in development, but is there > a way you could use the circle of friends idea to provide support to your > mum in the new location....these issues we face with our kids are the same > we all face at the times we most need support. Even if your mum needs to > live in the ILU or somewhere with more supported, person centred planning > can still help to make the service provision and her life as close as > possible to what she wants and needs. Also Essential Lifestyle Planning is > really good in this situation. > > I feel for you....it seems a cruel thing that us parents seem to commonly > have to deal with our kids and our parents transitions at the same time. > > Let me know when you have downloaded Skype! > > Jaquie > > *From:* familyvoices-bounces at inpress.pledgonline.com [ > mailto:familyvoices-bounces at inpress.pledgonline.com > ] *On Behalf Of *Family Voices > *Sent:* Thursday, 21 May 2009 2:29 PM > *To:* familyvoices at inpress.pledgonline.com > *Subject:* Re: FV: What is inclusion? > > Hi everyone, > > Loved the Kathie Snow statement AnitaS! > > Great story about Dan & Jack, Jo, of what can happen out there in the > community, how Dan was the connector! These experiences do keep you going. > > *Inclusion for the elderly - don't always want it.* > > I have been spending much time caring for my 88-yr old mother in law, who > has shifted unwillingly to an independent living unit in a retirement > village. She needs quite a lot of support and we have some in place, but > she really needs hostel care or nursing home. We tried to make the > transition easier for her from home to ILU. It would have been great for > her to stay in her own home and we have been supporting her to do so for > nine years plus, but her vulnerability is such that we had no choice. > Quite a few people she knows in the village but up to now she doesn't seem > to want to mingle anymore than she has to. This situation seems to go > against all I believe and work towards for Warren; Her choice would be her > family home - & hide away. On top of this we have had a mountain of > cleaning up to do to get her house ready for sale. If anyone has some sage > advice I'm happy to listen. > > Thinking about getting on Skype myself - let you know how I go Jo. > > Warm wishes to everyone! > > xo > > AnitaO > > -----Original Message----- > *From:* Family Voices [mailto:familyvoices at inpress.pledgonline.com > ] > *Sent:* Wednesday, 20 May 2009 10:51 PM > *To:* familyvoices at inpress.pledgonline.com > *Subject:* Re: FV: What is inclusion? > > Wow, I?m worn out thinking about all that travelling ? I hope it?ll be for > a few weeks. Yes, it is a small world and what a great opportunity to catch > up with Bruce to maybe get his reflections. Go Girl ? congratulations > Rachel on getting the gig ? I looove Rock n Roll (am I on the right track). > > I?ll get dad to run a copy of the DVD for you (are you reading this dad?) ? > not a heap on it but enough to enjoy and bring back those memories. > > Love Jo > > *From:* familyvoices-bounces at inpress.pledgonline.com [ > mailto:familyvoices-bounces at inpress.pledgonline.com > ] *On Behalf Of *Family Voices > *Sent:* Wednesday, 20 May 2009 7:05 PM > *To:* familyvoices at inpress.pledgonline.com > *Subject:* Re: FV: What is inclusion? > > Hello Jo Good to hear you and remember our time at the Ho Down and of > course other moments, How did the film come out. It would be good to see. > We are off to Dublin in August and now not only will Rachel present > a paper she is being invited to be part of the demonstration Rock and Roll > team. Rather her than me but she seems happy with the task. there are nine > other from the Down Syndrome group who have been involved for a long time so > she has a bit of work to do. Still they seemed keen to have her after they > asked her to go for a audition. She will also be performing in her two woman > show in London so she is going to be busy. I am looking forward to catching > up with Bridget as she son will both be there, Actually it will be great > because I see from the program that Bruce will also be attending. We might > just have our own little meeting and hear from him how he thought our visit > went. It is a small world really isn't it. We will spend some time with my > sister and her family england and then go to South Africa on the way home to > see my Brothers family. > You take care Miriam > ------------------------------ > > To: familyvoices at inpress.pledgonline.com > Date: Wed, 20 May 2009 08:10:02 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Thanks Miriam, it?s lovely to hear from you. When are you off on your trip > ? must be coming up fast now. Hope all is well with you and the family, > > Love Jo > > *From:* familyvoices-bounces at inpress.pledgonline.com [ > mailto:familyvoices-bounces at inpress.pledgonline.com > ] *On Behalf Of *Family Voices > *Sent:* Monday, 18 May 2009 7:46 PM > *To:* familyvoices at inpress.pledgonline.com > *Subject:* Re: FV: What is inclusion? > > Hi Jo I loved your happy weekend story. and the glimpse of you in your > home. I hope the education stuff gets better for you, sadly it is such a > long hard journey. You take care my warmest wishes Miriam > > > To: familyvoices at inpress.pledgonline.com > > Date: Sun, 17 May 2009 18:48:14 +0800 > > From: familyvoices at inpress.pledgonline.com > > Subject: Re: FV: What is inclusion? > > > > Hi Everyone, > > > > It is 5pm West Aussie time and I have been sitting here with a loooovely > > glass of Cab/Sav catching up on the conversation on FV learning from one > of > > my favourite sources. > > > > I am feeling pleasantly tired after being away to a Velor Microboard > Weekend > > at Fairbridge (just north of Pinjarra) with another amazing group of > people > > from all over the state learning more about inclusion and how to invite > > others to be an integral part of our sons life. While I was learning this > > stuff Dan was out having fun on the flying fox, abseiling, bush walking > etc > > supported by new friends..... > > > > Would like to share this story from the weekend, Dan and a young man, > Jack > > connected with one another on Saturday, I only discovered the connection > > this morning when Jack walked by at breakfast and I saw Dan's arm shoot > up > > to give him a 'high five', Jack stopped, said good morning, how are you > > mate, had a bit more of a chat and went off to have brekky. The abseiling > > was happening after breakfast and after some discussion with the > Coordinator > > she approached Jack to ask if he would take Dan abseiling which he > readily > > agreed to. When lunch time came around, Dan arrived back at the hall with > > Steve, minus Jack - I was wondering if everything went ok and decided to > > follow up with him when I could. 15 minutes later he came in and sat > down, > > I thanked him for helping Dan out and he said "it's me that will be > thanking > > Dan", he explained that he had never abseiled before so prior to taking > Dan > > up he did a dummy run on his own, then he went up and down with Dan. > After > > everyone had had their turn the instructor offered Jack a weekend job, > Jack > > said he didn't know much about abseiling and the response was "if you can > > support someone the way you did with Dan, talking to him all the way up > and > > down, helping him out where he needed, you know everything you need to > > know". Jack was stoked (he's 16) and I was in awe of him being so > > appreciative of Dan who helped him get the job. One day I'll stop being > > surprised but right now I still get caught out with how there are others > who > > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > > they help me keep going with the other hard slog stuff we have to face - > > thank goodness for these little gems. > > > > I have some education stuff happening (negative) but don't want to go > into > > it just now after my enjoyable weekend so will ask for some comments at > > another time when I'm ready to tackle it.......wish it could be never! > > Jo > > > > > > > > -----Original Message----- > > From: familyvoices-bounces at inpress.pledgonline.com > > [mailto:familyvoices-bounces at inpress.pledgonline.com] > On Behalf Of Family > > Voices > > Sent: Sunday, 17 May 2009 2:39 PM > > To: familyvoices at inpress.pledgonline.com > > Subject: Re: FV: What is inclusion? > > > > HI Gina > > Just been skyping with Anita. Wow is that scary I think the rule should > be > > only head for camera. > > > > I have also just gone to itunes and downloaded away the podcasts?? What > are > > they? > > > > Is anyone interested in skypeing? > > Cheers Jane > > > > > > Jane Warner/Hudson > > > > 07 46714737 > > > > > > -----Original Message----- > > From: familyvoices-bounces at inpress.pledgonline.com > > [mailto:familyvoices-bounces at inpress.pledgonline.com] > On Behalf Of Family > > Voices > > Sent: Sunday, May 17, 2009 1:32 PM > > To: familyvoices at inpress.pledgonline.com > > Subject: Re: FV: What is inclusion? > > > > Hi Jane > > > > Bearing in mind I haven't got P2Go at this stage but this is only as I > > understand it... > > > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > > it > > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > > then > > work out how, I just don't want to be trying to work something out that > > I > > cant do. > > > > I believe you can add in your own words etc, you might have to fiddle > > with the spelling, punctuation etc of Goondawindi to get the voice to > > say it well enough for you to be happy with, ie it might need some > > phonetic spelling, hyphens etc to work it out. In time you will work > > out how to spell things to have the 'real voice' pronounce it well > > enough. > > > > Q/Which manual or directions do you think are the simplest for > > programming? > > > > Have you joined the P2Go group - there are some great parents who have > > been beta testing it on that group and they are very keen to help out. > > I posted the link a while back, but can resend if you need it. These > > are people actually using it for their kids now, so would be great to > > post your specific questions to them. The developers are very hands on > > too. > > > > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > > saw > > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > > use > > it while she is. At some stage I would like her to use the phone just > > not > > sure if this is the right tool. Ie my thought for her was maybe a phone > > with video connection to me so she can learn mum rings, I see her face > > and > > from their we learn answering and talk back. > > > > We haven't got the iPhone yet, but this was our plan... Shawn is off > > contract with his phone at the moment having changed jobs and now for > > the first time in his working career not provided a phone (shame about > > that). So he was going to lock into a $49 or $59 capped plan to curb > > his costs each month. Optus are currently offering iPhone plans with a > > 8gig phone at this price so we believe we could sign up to one of those > > plans, bring his number across to that plan, then move the sim card to > > his Samsung phone an then just use the iPhone for Mac without a sim card > > (or buy a cheap prepaid plan if we felt it was good as an emergency > > phone). At least that way I could start developing options for its use, > > start storing things I would normally store on a stepped switch > > communicator and so on. > > > > I still need to find a way to switch adapt it, no-one has worked that > > out yet - but I will keep trying. > > > > You would just have to check out the costs/capabilities of video calls > > if that was a goal - I don't know much about that. Maybe skype is > > available to use via the internet connections rather than phone calls - > > not sure on that one. > > > > > > In saying all this she is very good with the ipod I put hi five and > > wiggles > > on yesterday and it is a hit. > > > > There are also some great free PIXAR short films on iTunes you can > > download - Mac loves them. Also check out the podcasts that are out > > there. We found heaps of stories for Mac on podcasts (all free). Mac > > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > > likes to sing along, but he also likes some albums called 'Little > > Voices' which is kids singing more contemporary and classic songs. He > > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > > tv), still partial to some Kiss from time to time. He is a funny kid > > really - he would be happy to have some big political speeches on there, > > loves a big political statement on the news, he readily 'glaarrs' along > > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > > on tv or radio. > > > > I am also going to see what I can learn about the Database program Bento > > which can be used on the iPhone and see if a PODD style system could be > > converted into that format. Just trying to find some workshops on PODD > > systems somewhere in the country at the moment so I can learn more. > > > > Sorry more questions, where is the best place to get easy step by step > > instructions to use ipod ie move programs on front page. > > > > Check out their website at http://www.proloquo2go.com/ > > > > > > > > Can I download a dvd to ipod direct or does everything have to go thru > > itunes? > > > > I think you can just convert a DVD into ipod formats - there would be > > software to do that depending on whether you are on PC or Mac. Some > > might be freeware, some cheap, some expensive. Again, since I haven't > > got the touch yet I can't be sure. > > > > Thanks Gina. You are such a inspirtation, I would love to get you to do > > a > > workshop for want of a better word in Goondiwindi. The young families I > > work with could learn so much from you. > > Anytime :-) > > > > Just a thought which I am sure you have covered, when you talk with the > > school do you have someone beside you? > > > > I have my husband sitting beside me for all these meetings. I would not > > go in there alone for love nor money. We sometimes don't think it is > > fair on those we meet with. Shawn and I have been together now for 21 > > years and know exactly where one another sits on issues so we can play > > the "good cop/bad cop" roles pretty well, and where we know it is > > unfair, is that we switch mid meeting if it is needed. Because Shawn > > has been doing so much study on disability representation in the Media > > etc he is great because he can just spout stuff, but also because he is > > a journalist he is trained to question, so he turns their questions > > round back at them - so we know we don't really play fair. We also don' > > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > > over-rated :-). For example there are kids at the school who have been > > denied access to other schools because they have 'behavioural and/or > > emotional type issues' (I know, shouldn't happen, shouldn't be denied > > access anywhere, but it does) so our school does take them with open > > arms, but these families are then sooooo grateful their kid has been > > accepted they are not going to risk making waves and subsequently they > > have been forced into this position of having to feel grateful and/or > > disempowered by the system. So, when you don't do the guilt thing, I > > guess it becomes a bit confronting for 'the system'. > > > > Hope it helps > > > > Feel free to contact me anytime if you think I can be useful. Mac's > > birthday is in June - he might get his iPhone then. So excessive > > providing such a thing to a 6yo but I honestly think it has the > > potential to be such a fab tool for him I will just have to cope with > > being an over indulgent parent (guilt free of course). > > > > Gina > > > > > > > > ________________________________ > > > > I am using the Free version of SPAMfighter > > . > > We are a community of 6 million users fighting spam. > > SPAMfighter has removed 1588 of my spam emails to date. > > The Professional version does not have this message. > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: > 05/16/09 > > 17:05:00 > > > > > > > > > ------------------------------ > > Find car news, reviews and more Looking to change your car this year? > ------------------------------ > > Let ninemsn property help Looking to move somewhere new this winter? > > > > -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu May 28 16:35:26 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 29 May 2009 09:35:26 +1000 Subject: FV: Facilitated communicaton In-Reply-To: <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au><65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au><172F386E13044A428262A61380719B82DA02B0@jcmail> <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> Message-ID: <1918AFBC616E4B80B13E4F5D2943796C@dell91> Hi all Brenda I have just come in have not really caught up with the thread but am also interested in the conversations re FC. I have to go away this weekend, away from family voices I am now printing off madly to show some of the wonderful words of wisdom. Right now I have a bit of headache so bit fuzzy but I have a thought in my head that we are not tracking the conversations so well. Is there anyone out there with out a fuzzy head who can think of a simple way to have threads in line??? Gina I have done the rule thing which is great another thing you have taught me but could we do something like that with subjects of conversations. Family voices is one of the most powerful things in my world at the moment, the sharing, knowledge, understanding is priceless. Hug to all Ps Hearing what you are saying Meg. Was the house offer your new one or old one. Keep riding that rollercoaster girlfriend and hang on!!! Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, May 28, 2009 11:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hallo everyone, I am a parent of a son who had a head injury many years ago and did not come up through the child raising times and so I find your conversation very enlightening. I now have a problem. I am travelling in Canada, using other people's computers, and wanted to forward the conversations about Facilitated Communication to someone I met this week. However, somehow I lost it. Would someone please forward those particular conversations to me again so that I may send them on to her. Regards, Brenda On Wed, May 27, 2009 at 8:10 PM, Family Voices wrote: Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! :-) Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.339 / Virus Database: 270.12.44/2140 - Release Date: 05/28/09 18:09:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu May 28 17:38:42 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 29 May 2009 08:38:42 +0800 Subject: FV: What is inclusion? In-Reply-To: <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> References: <000f01c9dc58$47148650$c600a8c0@ANITA> <19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S> <172F386E13044A428262A61380719B82DA00EC@jcmail> <002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> Message-ID: <003001c9dff5$d1f05560$75d10020$@net.au> Hey Libby and everyone Great post. This issue of paid/unpaid struck me in Alberta particularly with their creation of inclusion facilitator roles who do away with the need for paid support (I think a distinction was made between the social support type role vs the personal care roles...personal care is ok). I am so excited by this as an option and have started a trial with Eli (poor Eli gets experimented on a lot) with one of the Vela crew who is working on doing that role of facilitator with a view to eli joining groups without paid support. Eli aint easy...he can have some fairly extreme behaviours. So far so good....the first group he has expressed an interest in joining has been very welcoming. Our inclusion guy is doing all the legwork/liaising for us and they are picking eli up Tuesday week to take him to the first workshop and then dropping him back home...no paid/unpaid support other than the group itself. We'll see how it goes but I am optimistic. My understanding is that paying an inclusion facilitator is within the criteria of our now much increased Post School Options funding, which makes it very doable. Jaquie On Wed, May 27, 2009 at 8:10 PM, Family Voices wrote: Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu May 28 17:44:15 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 29 May 2009 08:44:15 +0800 Subject: FV: Facilitated communicaton In-Reply-To: <1918AFBC616E4B80B13E4F5D2943796C@dell91> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au><65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au><172F386E13044A428262A61380719B82DA02B0@jcmail> <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> <1918AFBC616E4B80B13E4F5D2943796C@dell91> Message-ID: <003b01c9dff6$97bf3810$c73da830$@net.au> Have you guys checked out DEAL, Rosemary Crossley's organisation which supports communication? Looks awesome. http://home.vicnet.net.au/~dealcc/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 29 May 2009 7:35 AM To: familyvoices at inpress.pledgonline.com Subject: FV: Facilitated communicaton Hi all Brenda I have just come in have not really caught up with the thread but am also interested in the conversations re FC. I have to go away this weekend, away from family voices I am now printing off madly to show some of the wonderful words of wisdom. Right now I have a bit of headache so bit fuzzy but I have a thought in my head that we are not tracking the conversations so well. Is there anyone out there with out a fuzzy head who can think of a simple way to have threads in line??? Gina I have done the rule thing which is great another thing you have taught me but could we do something like that with subjects of conversations. Family voices is one of the most powerful things in my world at the moment, the sharing, knowledge, understanding is priceless. Hug to all Ps Hearing what you are saying Meg. Was the house offer your new one or old one. Keep riding that rollercoaster girlfriend and hang on!!! Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, May 28, 2009 11:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hallo everyone, I am a parent of a son who had a head injury many years ago and did not come up through the child raising times and so I find your conversation very enlightening. I now have a problem. I am travelling in Canada, using other people's computers, and wanted to forward the conversations about Facilitated Communication to someone I met this week. However, somehow I lost it. Would someone please forward those particular conversations to me again so that I may send them on to her. Regards, Brenda On Wed, May 27, 2009 at 8:10 PM, Family Voices wrote: Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.339 / Virus Database: 270.12.44/2140 - Release Date: 05/28/09 18:09:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu May 28 17:47:55 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 29 May 2009 08:47:55 +0800 Subject: FV: I'm in Sydney! In-Reply-To: <003001c9dff5$d1f05560$75d10020$@net.au> References: <000f01c9dc58$47148650$c600a8c0@ANITA> <19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S> <172F386E13044A428262A61380719B82DA00EC@jcmail> <002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> <003001c9dff5$d1f05560$75d10020$@net.au> Message-ID: <004001c9dff7$1b1a62c0$514f2840$@net.au> Also Libby...I lost the email you sent in response to me being in Sydney..which I am, yay! We're at a conference...Darryl seems to think it goes til 9pm Monday night which isn't impressing me but I am trying to confirm that, as I'd love to meet you. Jaquie J On Wed, May 27, 2009 at 8:10 PM, Family Voices wrote: Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu May 28 18:20:43 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 29 May 2009 09:20:43 +0800 Subject: FV: I'm in Sydney! In-Reply-To: <004001c9dff7$1b1a62c0$514f2840$@net.au> References: <000f01c9dc58$47148650$c600a8c0@ANITA> <19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au> <65C85FB807EB430A82135C087DF32700@D8XYGK1S> <172F386E13044A428262A61380719B82DA00EC@jcmail> <002a01c9dd91$87a12090$96e361b0$@net.au> <172F386E13044A428262A61380719B82DA02B0@jcmail> <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> <003001c9dff5$d1f05560$75d10020$@net.au> <004001c9dff7$1b1a62c0$514f2840$@net.au> Message-ID: <000601c9dffb$b04a6260$10df2720$@net.au> Damn...this conference is to 9pm every night to Monday..i'm around all day today tho or tues morning. Mob: 0407 223 234 Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 29 May 2009 8:48 AM To: familyvoices at inpress.pledgonline.com Subject: FV: I'm in Sydney! Also Libby...I lost the email you sent in response to me being in Sydney..which I am, yay! We're at a conference...Darryl seems to think it goes til 9pm Monday night which isn't impressing me but I am trying to confirm that, as I'd love to meet you. Jaquie J On Wed, May 27, 2009 at 8:10 PM, Family Voices wrote: Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 29 00:42:13 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 29 May 2009 15:42:13 +0800 Subject: FV: Facilitated communicaton In-Reply-To: <1918AFBC616E4B80B13E4F5D2943796C@dell91> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au><65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au><172F386E13044A428262A61380719B82DA02B0@jcmail> <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> <1918AFBC616E4B80B13E4F5D2943796C@dell91> Message-ID: <002601c9e030$fb7c7720$f2756560$@net.au> Diddo Jane about how powerful FV is for me too - thanks everyone. Following on from the discussion about the Support Workers role - Helen, Gina, Libby and others have talked about, I am really interested in how to go about training people. When I consider that a lot of 'penny dropping' has happened for me recently because of the experience in Canada, FV discussion, Microboards etc that's a lot to help me build on what I already knew and was actively supporting Daniel with, however apart from finding the right people, what is a good training model to assist people to 'get it'? Great question Jane, as I too have been wondering how I can get the threads organised as there is so much valuable information to draw from -would be much easier if I could organise it. Hope your fuzzy head is clearing Jane, hoping the Conference is interesting Jaquie and you can catch up with some of the FV Mob. Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 29 May 2009 7:35 AM To: familyvoices at inpress.pledgonline.com Subject: FV: Facilitated communicaton Hi all Brenda I have just come in have not really caught up with the thread but am also interested in the conversations re FC. I have to go away this weekend, away from family voices I am now printing off madly to show some of the wonderful words of wisdom. Right now I have a bit of headache so bit fuzzy but I have a thought in my head that we are not tracking the conversations so well. Is there anyone out there with out a fuzzy head who can think of a simple way to have threads in line??? Gina I have done the rule thing which is great another thing you have taught me but could we do something like that with subjects of conversations. Family voices is one of the most powerful things in my world at the moment, the sharing, knowledge, understanding is priceless. Hug to all Ps Hearing what you are saying Meg. Was the house offer your new one or old one. Keep riding that rollercoaster girlfriend and hang on!!! Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, May 28, 2009 11:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hallo everyone, I am a parent of a son who had a head injury many years ago and did not come up through the child raising times and so I find your conversation very enlightening. I now have a problem. I am travelling in Canada, using other people's computers, and wanted to forward the conversations about Facilitated Communication to someone I met this week. However, somehow I lost it. Would someone please forward those particular conversations to me again so that I may send them on to her. Regards, Brenda On Wed, May 27, 2009 at 8:10 PM, Family Voices wrote: Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.339 / Virus Database: 270.12.44/2140 - Release Date: 05/28/09 18:09:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Fri May 29 23:05:08 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 30 May 2009 14:05:08 +0800 Subject: FV: Facilitated communicaton In-Reply-To: <1918AFBC616E4B80B13E4F5D2943796C@dell91> References: <000f01c9dc58$47148650$c600a8c0@ANITA><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au><65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au><172F386E13044A428262A61380719B82DA02B0@jcmail> <1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com> <1918AFBC616E4B80B13E4F5D2943796C@dell91> Message-ID: <001f01c9e0ec$96296a10$c27c3e30$@com> It would do this and sort them but you have to change the header (subject) of each positing to keep the thread the same. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 29 May 2009 7:35 AM To: familyvoices at inpress.pledgonline.com Subject: FV: Facilitated communicaton Hi all Brenda I have just come in have not really caught up with the thread but am also interested in the conversations re FC. I have to go away this weekend, away from family voices I am now printing off madly to show some of the wonderful words of wisdom. Right now I have a bit of headache so bit fuzzy but I have a thought in my head that we are not tracking the conversations so well. Is there anyone out there with out a fuzzy head who can think of a simple way to have threads in line??? Gina I have done the rule thing which is great another thing you have taught me but could we do something like that with subjects of conversations. Family voices is one of the most powerful things in my world at the moment, the sharing, knowledge, understanding is priceless. Hug to all Ps Hearing what you are saying Meg. Was the house offer your new one or old one. Keep riding that rollercoaster girlfriend and hang on!!! Jane Warner/Hudson 07 46714737 _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, May 28, 2009 11:26 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hallo everyone, I am a parent of a son who had a head injury many years ago and did not come up through the child raising times and so I find your conversation very enlightening. I now have a problem. I am travelling in Canada, using other people's computers, and wanted to forward the conversations about Facilitated Communication to someone I met this week. However, somehow I lost it. Would someone please forward those particular conversations to me again so that I may send them on to her. Regards, Brenda On Wed, May 27, 2009 at 8:10 PM, Family Voices wrote: Another aspect of this we have faced is the absolutely IMPLICIT 'dependence learning' that is done through the very act of having support workers. This is so deep in Matthew, and I feel quite certain at this stage that this is an inherent aspect of the 'support worker' model. Matthew turns to the person he is with and puts his hand to his mouth (a morph of the drink/eat sign). This sign is a decision-making sign and one that he initiates. It's fabulous that he initiates it (decision-making in practice) but it quickly becomes a handing-over of power (that he also initiates). It's also the fact that he does it in the first place. Depending on the context, it variously means - tell me what is happening next - where are we going - I want something - who is coming after you bugger off (and are they going to be more exciting that you my boring sister?!) As you can see, depending on how you respond you can very easily become the locus of control. Why doesn't Matthew make a decision - eg I want a drink - a go initiate it? He's capable of this with assistance (this was meant as a rhetorical/theoretical question). Instead he's learned so subtely and powerfully over the years that the people who come in to his home are responsible for this. I'm using this as an example, not really looking for suggestions here about others ways Matthew could communicate - we're really working on this. I think what I wanted to raise are actually issues around involvement of paid people/unpaid people - I have seen this as another topic of discussion here So much of what families/individuals are conditioned around is the need for paid support. Families (including ours), leap to it. However we baulk (including ours), are fearful, worried, don't think it could be possible etc around the unpaid stuff. We're taught (professional gift model) that this is what is needed. I look at the self-managed community participation options in NSW for example, where the work of families seems very quickly to be around hiring support workers to assist the young person in their post-school pursuits. It becomes like a vicious cycle - the more we get caught up in managing the paid system the easier it is to stay away from the (harder) work of the unpaid stuff. I have found in our accommodation agreement/arrangement with Matthew's service provider that we too get driven by this. His budget is there to use to hire support workers isn't it? It was therefore very interesting to hear Bruce Uditsky from Alberta, Canada talk at Family Advocacy conference a couple of years ago about this - their response has been to work on a number of projects that seek to systemically develop more natural supports. For example their partnership with Rotary where support on the job is built through co-workers. My example above is to talk about the potentially powerful impact of this on people and their decision-making capacity. There are many things we can do to help put power back into Matthew's hands, but many of these are really just fiddling, cos they don't get at the root, which is the very presence of the person whose job it is 'to help' (no matter how empowering they are in the practice of this role). Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 27 May 2009 9:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? The response we are accustomed to is "I don't know" when she absolutely does know. I think this comes from a place of wanting to please, not wanting to be to told no and also wanting to get the answer right. Depending on the complexity of the question we now give her ridiculous options like cat food on toast to push her to articulate her choice or reframing the question/breaking it down in sequential order to assist understanding and then decision making. We are also very aware that if Jos makes a clear choice that we honor that (as much as we can, education about good food choices or bed times if very tired etc) even if it really puts us out otherwise her choice making is really redundant, leading to more I don't know. The other aspect is that we know her well and understand her reluctance to make decisions however if she were in a service world it would simply move on and make decisions on her behalf that suited the service not her as a person. We are really keen to encourage her independent decision making as she will need it in the future to maintain her personal independence and protect her form being, excuse me, fucked around. It's interesting that what is a big ask for Jos would be just a natural occurrence for the other kids. Todd and I are the moderators of this and we try to always be mindful that our power over her life is much more profound in good ways and also in not so good if were not careful to keep her interests at the forefront of our minds. Megs Offer on house accepted, meeting with new school held.still thinking, geriatric dog survived kennel experience (just), eldest child home from England tomorrow, middle child has new work placement at child care centre, youngest child 15 on Friday, just like everyone else ...busy, and it's now winter YUCK !!!!! _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 26 May 2009 9:36 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? This is all so true...we all fill in the gaps of what we hear with our own assumptions. We have a terrific service dude here in Perth who works with the vela families who always reminds us that everyone's default answer is always 'no'...until we have enough information. One of eli's friends years ago used to routinely refuse to sleepover. I assumed, in my wounded heart maternal fashion, for about a year that he said no because he didn't really want to be around eli that much because he was too weird. When i got around to asking him, he said...i'm planning to live with eli when i move out of home but i don't think i am ready to look after him all by myself yet. This young man was 13`at the time, and for some reason he had assumed that a sleepover meant me and Darryl wouldn't be here! We've had many sleepovers since and even now, 4 years later, some. Weekends liam almost lives here. One strategy we've been using with one family is to build up an image of adult life using favourite movies and tv shows. We have a young woman at present with some challenges around adult behaviour, and are using her favourite tv series 'Friends' to help her to identify adult vs childish ways of being. So far it has been very successful. I think this process of developing an adult identity is comlex for all of us. We've had some awesome help with this from the international men's group Mankind Project who eli is in the process of joining. I recommend them from what i have seen so far to anyone with sons who are transitioning into an adult male identity, but they have been profound and magnificent in their welcome and inclusion of eli so far. Check out the website: http://www.mkp.org/ Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:31 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? That's really interesting Jill and has really made me think! Quite a ground breaking thing - so simple yet so easily missed. This has really made me think about my language and how we assume so much in our conversations in life Libby _________________________________ _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 25 May 2009 11:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jill, Interesting that the wording was the hold back. I did ask Lauren if she was lonely and was our home too big for her to manage. But she just looked at me vaguely and said no. Maybe I should word it differently. I don't want her to feel she HAS to move away from her security either. It might take years for us to get to a place where she lives independently of us, but I feel we have started her thinking she can do it. When are you going to South America Jill? Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Monday, May 25, 2009 11:37 AM Subject: Re: FV: What is inclusion? Hi Maureen Great news about Lauren's 'holiday'! I can relate to it so well as it was the same for me with Ben when I returned from Canada. Apart from his solo experience whilst I was in Canada, I eventually worked out what was adding to his concern re living independently. I used to say to him "wouldn't you like to live by yourself?" or something similar and just lately twigged that he was taking this literally and thinking that he would be just in the house by himself with nothing else happening! When I thought to add that he would still go to work, go out with friends, visit me etc, his whole attitude changed. Silly me, thought he was a mind reader! Ben has now agreed to having a look at some places for himself, so we will gradually do some open inspections. More holidays on the horizon for you! Regards Jill Hello everyone, Life has been busy here and I have been reading all the contributions and not participating. Just reading.. "Moving Mum"can be as stressful as thinking about moving our young ones into places of their own. As I have a 91 y.o. Mum who lives in an retirement apartment and is very independent, but she can't drive or attend medical appointments without some assistance and so I (and others) are always there for her. We are a huge family, and we love sharing the responsibility of Mum, but for others like Anita, who are "IT" - the problems can't be shared - there is a huge responsibility. There is such a close parallel between disability and aged care. I often see the same issues arise between Mum and Lauren. Age is not the barrier! My good story for the day is.. Murdoch and I went to Hobart for three nights of respite and golf.. We ate too much and drank too much and went to the casino and the horse track and generally enjoyed ourselves. All this was possible because we "bit the bullet"and left Lauren at home - ALONE!! I had prepared a few meals in advance. She ordered a Pizza to share with a friend who came over and stayed on Saturday night. They took themselves out to brunch on Sunday morning and she managed her life and recreation very well without us.. We are delighted to tell you we are very excited about her independence, but more so, she was so delighted to see us!! Aren't we lucky? To be greeted so lovingly and warmly when we drove in the garage and her little laughing face was at the door. My other kids never greet me so welcomingly! She really loves us..That is so nice. It is so evident even though she just can't bring herself to mouth the words"I love you Mum and Dad"- We have blessed evidence and that is so nice for us! I hope you are all well Maureen ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Sunday, May 24, 2009 8:13 PM Subject: Re: FV: What is inclusion? Thanks Jaquie . . . I appreciate your thoughts - I'm off on a holiday for two weeks so hopefully I'll come back with a peaceful and clearer mind! Cheers! J Anita O'Brien 6 Bogong Court Doncaster East 3109 Ph: 03 9841 8492 Mobile: 0416 064 045 email: anita.obrien at optusnet.com.au -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Sunday, 24 May 2009 5:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hey Anita I just went through this myself. I don't really have any sage advice, other than to say that the microboard model has been extended in North America to successfully cover situations like this one..ie so folks can be supported at home. That probably doesn't help you directly as the model is still so much in development, but is there a way you could use the circle of friends idea to provide support to your mum in the new location....these issues we face with our kids are the same we all face at the times we most need support. Even if your mum needs to live in the ILU or somewhere with more supported, person centred planning can still help to make the service provision and her life as close as possible to what she wants and needs. Also Essential Lifestyle Planning is really good in this situation. I feel for you....it seems a cruel thing that us parents seem to commonly have to deal with our kids and our parents transitions at the same time. Let me know when you have downloaded Skype! Jaquie From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 21 May 2009 2:29 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi everyone, Loved the Kathie Snow statement AnitaS! Great story about Dan & Jack, Jo, of what can happen out there in the community, how Dan was the connector! These experiences do keep you going. Inclusion for the elderly - don't always want it. I have been spending much time caring for my 88-yr old mother in law, who has shifted unwillingly to an independent living unit in a retirement village. She needs quite a lot of support and we have some in place, but she really needs hostel care or nursing home. We tried to make the transition easier for her from home to ILU. It would have been great for her to stay in her own home and we have been supporting her to do so for nine years plus, but her vulnerability is such that we had no choice. Quite a few people she knows in the village but up to now she doesn't seem to want to mingle anymore than she has to. This situation seems to go against all I believe and work towards for Warren; Her choice would be her family home - & hide away. On top of this we have had a mountain of cleaning up to do to get her house ready for sale. If anyone has some sage advice I'm happy to listen. Thinking about getting on Skype myself - let you know how I go Jo. Warm wishes to everyone! xo AnitaO -----Original Message----- From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] Sent: Wednesday, 20 May 2009 10:51 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Wow, I'm worn out thinking about all that travelling - I hope it'll be for a few weeks. Yes, it is a small world and what a great opportunity to catch up with Bruce to maybe get his reflections. Go Girl - congratulations Rachel on getting the gig - I looove Rock n Roll (am I on the right track). I'll get dad to run a copy of the DVD for you (are you reading this dad?) - not a heap on it but enough to enjoy and bring back those memories. Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 20 May 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hello Jo Good to hear you and remember our time at the Ho Down and of course other moments, How did the film come out. It would be good to see. We are off to Dublin in August and now not only will Rachel present a paper she is being invited to be part of the demonstration Rock and Roll team. Rather her than me but she seems happy with the task. there are nine other from the Down Syndrome group who have been involved for a long time so she has a bit of work to do. Still they seemed keen to have her after they asked her to go for a audition. She will also be performing in her two woman show in London so she is going to be busy. I am looking forward to catching up with Bridget as she son will both be there, Actually it will be great because I see from the program that Bruce will also be attending. We might just have our own little meeting and hear from him how he thought our visit went. It is a small world really isn't it. We will spend some time with my sister and her family england and then go to South Africa on the way home to see my Brothers family. You take care Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 20 May 2009 08:10:02 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Thanks Miriam, it's lovely to hear from you. When are you off on your trip - must be coming up fast now. Hope all is well with you and the family, Love Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, 18 May 2009 7:46 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What is inclusion? Hi Jo I loved your happy weekend story. and the glimpse of you in your home. I hope the education stuff gets better for you, sadly it is such a long hard journey. You take care my warmest wishes Miriam > To: familyvoices at inpress.pledgonline.com > Date: Sun, 17 May 2009 18:48:14 +0800 > From: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Everyone, > > It is 5pm West Aussie time and I have been sitting here with a loooovely > glass of Cab/Sav catching up on the conversation on FV learning from one of > my favourite sources. > > I am feeling pleasantly tired after being away to a Velor Microboard Weekend > at Fairbridge (just north of Pinjarra) with another amazing group of people > from all over the state learning more about inclusion and how to invite > others to be an integral part of our sons life. While I was learning this > stuff Dan was out having fun on the flying fox, abseiling, bush walking etc > supported by new friends..... > > Would like to share this story from the weekend, Dan and a young man, Jack > connected with one another on Saturday, I only discovered the connection > this morning when Jack walked by at breakfast and I saw Dan's arm shoot up > to give him a 'high five', Jack stopped, said good morning, how are you > mate, had a bit more of a chat and went off to have brekky. The abseiling > was happening after breakfast and after some discussion with the Coordinator > she approached Jack to ask if he would take Dan abseiling which he readily > agreed to. When lunch time came around, Dan arrived back at the hall with > Steve, minus Jack - I was wondering if everything went ok and decided to > follow up with him when I could. 15 minutes later he came in and sat down, > I thanked him for helping Dan out and he said "it's me that will be thanking > Dan", he explained that he had never abseiled before so prior to taking Dan > up he did a dummy run on his own, then he went up and down with Dan. After > everyone had had their turn the instructor offered Jack a weekend job, Jack > said he didn't know much about abseiling and the response was "if you can > support someone the way you did with Dan, talking to him all the way up and > down, helping him out where he needed, you know everything you need to > know". Jack was stoked (he's 16) and I was in awe of him being so > appreciative of Dan who helped him get the job. One day I'll stop being > surprised but right now I still get caught out with how there are others who > are so appreciative of our kids. Just wanted to share a warm and fuzzy - > they help me keep going with the other hard slog stuff we have to face - > thank goodness for these little gems. > > I have some education stuff happening (negative) but don't want to go into > it just now after my enjoyable weekend so will ask for some comments at > another time when I'm ready to tackle it.......wish it could be never! > Jo > > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, 17 May 2009 2:39 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > HI Gina > Just been skyping with Anita. Wow is that scary I think the rule should be > only head for camera. > > I have also just gone to itunes and downloaded away the podcasts?? What are > they? > > Is anyone interested in skypeing? > Cheers Jane > > > Jane Warner/Hudson > > 07 46714737 > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family > Voices > Sent: Sunday, May 17, 2009 1:32 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What is inclusion? > > Hi Jane > > Bearing in mind I haven't got P2Go at this stage but this is only as I > understand it... > > Q/ With the prolquo when I go into "about me" Can I put in stuff where > it > says "I go to the .....school?" ie Goondiwindi. If it is yes I will > then > work out how, I just don't want to be trying to work something out that > I > cant do. > > I believe you can add in your own words etc, you might have to fiddle > with the spelling, punctuation etc of Goondawindi to get the voice to > say it well enough for you to be happy with, ie it might need some > phonetic spelling, hyphens etc to work it out. In time you will work > out how to spell things to have the 'real voice' pronounce it well > enough. > > Q/Which manual or directions do you think are the simplest for > programming? > > Have you joined the P2Go group - there are some great parents who have > been beta testing it on that group and they are very keen to help out. > I posted the link a while back, but can resend if you need it. These > are people actually using it for their kids now, so would be great to > post your specific questions to them. The developers are very hands on > too. > > > Q/ Do you think it would be worth my while to get a Iphone for me? (I > saw > one on ebay that looked ok), Sarah have the Ipod so that I can learn to > use > it while she is. At some stage I would like her to use the phone just > not > sure if this is the right tool. Ie my thought for her was maybe a phone > with video connection to me so she can learn mum rings, I see her face > and > from their we learn answering and talk back. > > We haven't got the iPhone yet, but this was our plan... Shawn is off > contract with his phone at the moment having changed jobs and now for > the first time in his working career not provided a phone (shame about > that). So he was going to lock into a $49 or $59 capped plan to curb > his costs each month. Optus are currently offering iPhone plans with a > 8gig phone at this price so we believe we could sign up to one of those > plans, bring his number across to that plan, then move the sim card to > his Samsung phone an then just use the iPhone for Mac without a sim card > (or buy a cheap prepaid plan if we felt it was good as an emergency > phone). At least that way I could start developing options for its use, > start storing things I would normally store on a stepped switch > communicator and so on. > > I still need to find a way to switch adapt it, no-one has worked that > out yet - but I will keep trying. > > You would just have to check out the costs/capabilities of video calls > if that was a goal - I don't know much about that. Maybe skype is > available to use via the internet connections rather than phone calls - > not sure on that one. > > > In saying all this she is very good with the ipod I put hi five and > wiggles > on yesterday and it is a hit. > > There are also some great free PIXAR short films on iTunes you can > download - Mac loves them. Also check out the podcasts that are out > there. We found heaps of stories for Mac on podcasts (all free). Mac > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he > likes to sing along, but he also likes some albums called 'Little > Voices' which is kids singing more contemporary and classic songs. He > seems to have ended his Tom Jones phase (now that the 'beer ad' is off > tv), still partial to some Kiss from time to time. He is a funny kid > really - he would be happy to have some big political speeches on there, > loves a big political statement on the news, he readily 'glaarrs' along > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd > yet, but he certainly pipes up everytime Kevvy is banging on about stuff > on tv or radio. > > I am also going to see what I can learn about the Database program Bento > which can be used on the iPhone and see if a PODD style system could be > converted into that format. Just trying to find some workshops on PODD > systems somewhere in the country at the moment so I can learn more. > > Sorry more questions, where is the best place to get easy step by step > instructions to use ipod ie move programs on front page. > > Check out their website at http://www.proloquo2go.com/ > > > > Can I download a dvd to ipod direct or does everything have to go thru > itunes? > > I think you can just convert a DVD into ipod formats - there would be > software to do that depending on whether you are on PC or Mac. Some > might be freeware, some cheap, some expensive. Again, since I haven't > got the touch yet I can't be sure. > > Thanks Gina. You are such a inspirtation, I would love to get you to do > a > workshop for want of a better word in Goondiwindi. The young families I > work with could learn so much from you. > Anytime :-) > > Just a thought which I am sure you have covered, when you talk with the > school do you have someone beside you? > > I have my husband sitting beside me for all these meetings. I would not > go in there alone for love nor money. We sometimes don't think it is > fair on those we meet with. Shawn and I have been together now for 21 > years and know exactly where one another sits on issues so we can play > the "good cop/bad cop" roles pretty well, and where we know it is > unfair, is that we switch mid meeting if it is needed. Because Shawn > has been doing so much study on disability representation in the Media > etc he is great because he can just spout stuff, but also because he is > a journalist he is trained to question, so he turns their questions > round back at them - so we know we don't really play fair. We also don' > t go in for all the 'guilt' stuff we are meant to - guilt is soooo > over-rated :-). For example there are kids at the school who have been > denied access to other schools because they have 'behavioural and/or > emotional type issues' (I know, shouldn't happen, shouldn't be denied > access anywhere, but it does) so our school does take them with open > arms, but these families are then sooooo grateful their kid has been > accepted they are not going to risk making waves and subsequently they > have been forced into this position of having to feel grateful and/or > disempowered by the system. So, when you don't do the guilt thing, I > guess it becomes a bit confronting for 'the system'. > > Hope it helps > > Feel free to contact me anytime if you think I can be useful. Mac's > birthday is in June - he might get his iPhone then. So excessive > providing such a thing to a 6yo but I honestly think it has the > potential to be such a fab tool for him I will just have to cope with > being an over indulgent parent (guilt free of course). > > Gina > > > > ________________________________ > > I am using the Free version of SPAMfighter > . > We are a community of 6 million users fighting spam. > SPAMfighter has removed 1588 of my spam emails to date. > The Professional version does not have this message. > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date: 05/16/09 > 17:05:00 > > > > _____ Find car news, reviews and more Looking to change your car this year? _____ Let ninemsn property help Looking to move somewhere new this winter? No virus found in this incoming message. 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