From familyvoices at inpress.pledgonline.com Thu Apr 16 15:41:06 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 17 Apr 2009 08:41:06 +1000 Subject: FV: Reciprocal visit and inclusion movement In-Reply-To: <007401c9bcfa$c626fea0$5274fbe0$@com> References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au> <007401c9bcfa$c626fea0$5274fbe0$@com> Message-ID: 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 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 -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090417/baeaee6f/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: image001.jpg Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090417/baeaee6f/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Thu Apr 16 18:08:32 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 17 Apr 2009 11:08:32 +1000 Subject: FV: Reciprocal visit and inclusion movement References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> Message-ID: 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 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 -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090417/23df3146/attachment-0001.html From familyvoices at inpress.pledgonline.com Thu Apr 16 22:07:42 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 17 Apr 2009 13:07:42 +0800 Subject: FV: Family Voices Information Message-ID: <000e01c9bf1a$72d44a60$587cdf20$@com> Hello everyone! Pictures of the AACL Family Conference 2009 are now available to view at the NEW Family Voices Picture section: http://inpress.pledgonline.com/navigation/5interactive/familyvoicespictures. htm A reminder that you can point people wanting to join to: http://www.pledgonline.com/familyvoices Existing members can also change their current subscription options at this address too. Also a reminder - If you want to post a message to Family Voices, send an email to: familyvoices at inpress.pledgonline.com Kind Regards, Ruben Wills -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090417/9d07818d/attachment.html From familyvoices at inpress.pledgonline.com Thu Apr 16 23:30:02 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 17 Apr 2009 16:30:02 +1000 Subject: FV: Reciprocal visit and inclusion movement In-Reply-To: References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> Message-ID: 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 -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090417/c0472f76/attachment-0001.html From familyvoices at inpress.pledgonline.com Thu Apr 16 23:45:03 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 17 Apr 2009 16:45:03 +1000 Subject: FV: Family Voices Information In-Reply-To: <000e01c9bf1a$72d44a60$587cdf20$@com> References: <000e01c9bf1a$72d44a60$587cdf20$@com> Message-ID: Fantastic photos...make mine look very amateur, which they are! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 17 April 2009 3:08 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Family Voices Information Hello everyone! Pictures of the AACL Family Conference 2009 are now available to view at the NEW Family Voices Picture section: http://inpress.pledgonline.com/navigation/5interactive/familyvoicespictu res.htm A reminder that you can point people wanting to join to: http://www.pledgonline.com/familyvoices Existing members can also change their current subscription options at this address too. Also a reminder - If you want to post a message to Family Voices, send an email to: familyvoices at inpress.pledgonline.com Kind Regards, Ruben Wills __________ Information from ESET NOD32 Antivirus, version of virus signature database 4015 (20090417) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090417/523d628e/attachment.html From familyvoices at inpress.pledgonline.com Thu Apr 16 23:57:39 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 17 Apr 2009 16:57:39 +1000 Subject: FV: teleconference on Wednesday Message-ID: <049201c9bf29$cc6e39f0$654aadd0$@net.au> Hi All I have only just go back on the list. I can most likely take part in the teleconference on Wednesday 29th. I'll wait for more details before I commit but will keep reading the posts to see where everyone is up to. Sally Sally Richards 6281 0974 0402 418 974 www.jacksonwest.org -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090417/7dc72c60/attachment.html From familyvoices at inpress.pledgonline.com Sat Apr 18 20:26:10 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 19 Apr 2009 13:26:10 +1000 Subject: FV: Family Voices Information In-Reply-To: <000e01c9bf1a$72d44a60$587cdf20$@com> References: <000e01c9bf1a$72d44a60$587cdf20$@com> Message-ID: <20B7BA270E7F4CA7ABEA72AF26D86C66@dell91> HI Ruben Thank you for all your hard work. If we are already on do we need to or should we change our subscription options.? What is the best way to send the photos. Again thanks 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, April 17, 2009 3:08 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Family Voices Information Hello everyone! Pictures of the AACL Family Conference 2009 are now available to view at the NEW Family Voices Picture section: http://inpress.pledgonline.com/navigation/5interactive/familyvoicespictures. htm A reminder that you can point people wanting to join to: http://www.pledgonline.com/familyvoices Existing members can also change their current subscription options at this address too. Also a reminder - If you want to post a message to Family Voices, send an email to: familyvoices at inpress.pledgonline.com Kind Regards, Ruben Wills __________ Information from ESET NOD32 Antivirus, version of virus signature database 4015 (20090417) __________ 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: 8.0.238 / Virus Database: 270.12.0/2065 - Release Date: 04/17/09 17:52:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090419/2dac75f4/attachment.html From familyvoices at inpress.pledgonline.com Sat Apr 18 21:38:19 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 19 Apr 2009 12:38:19 +0800 Subject: FV: More Information Message-ID: <000801c9c0a8$ad9cc160$08d64420$@com> Hi everyone, Just some quick follow up notes about Family Voices: 1. Due to a server move error, all mailing archives prior to the 16th of April no longer appear on the Archives page. They will soon be available, however from a different location. 2. If you are already subscribed, you can (although not essential) change your subscription options such as your password, your name, how your messages are received, etc. 3. If you want to publish any photos to the website, please send them to: ruben at kelvin-media.com along with a description of where they should be placed. Regards, Ruben Wills -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090419/5ad44d88/attachment.html From familyvoices at inpress.pledgonline.com Sun Apr 19 17:41:45 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 20 Apr 2009 10:41:45 +1000 Subject: FV: More Information In-Reply-To: <000801c9c0a8$ad9cc160$08d64420$@com> References: <000801c9c0a8$ad9cc160$08d64420$@com> Message-ID: <00c501c9c150$c8aac8f0$5a005ad0$@Speed@mamre.org.au> Hi Ruben, Thanks so much for all you've done on the site to keep us communicating. Very much appreciated. When sending photos to you, can we send a link eg to snapfish or flickr? My photos will be too big to email as attachments. Also, any news on the wiki? Thanks heaps again 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: Sunday, 19 April 2009 2:38 PM To: familyvoices at inpress.pledgonline.com Subject: FV: More Information Hi everyone, Just some quick follow up notes about Family Voices: 1. Due to a server move error, all mailing archives prior to the 16th of April no longer appear on the Archives page. They will soon be available, however from a different location. 2. If you are already subscribed, you can (although not essential) change your subscription options such as your password, your name, how your messages are received, etc. 3. If you want to publish any photos to the website, please send them to: ruben at kelvin-media.com along with a description of where they should be placed. Regards, Ruben Wills __________ Information from ESET NOD32 Antivirus, version of virus signature database 4019 (20090418) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com !DSPAM:585,49eaaaf981311344965704! -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090420/2e7e37d5/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090420/2e7e37d5/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Mon Apr 20 06:37:55 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 20 Apr 2009 23:37:55 +1000 Subject: FV: Early Intervention from Meg Sweeney Message-ID: Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090420/6e06cae1/attachment-0001.html From familyvoices at inpress.pledgonline.com Mon Apr 20 07:40:19 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 21 Apr 2009 00:10:19 +0930 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: Message-ID: Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us?we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind?.I agree??Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience?.its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ?..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au I am using the Free version of SPAMfighter. We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com Get the new Windows Live Messenger. Looking for a fresh way to share photos? _________________________________________________________________ View photos of singles in your area Click Here http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fdating%2Eninemsn%2Ecom%2Eau%2Fchannel%2Findex%2Easpx%3Ftrackingid%3D1046247&_t=773166080&_r=Hotmail_Endtext&_m=EXT -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090421/52dc9247/attachment-0001.html From familyvoices at inpress.pledgonline.com Mon Apr 20 17:01:11 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 21 Apr 2009 10:01:11 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: Message-ID: <000d01c9c214$48558b30$d900a190$@Speed@mamre.org.au> Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? _____ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090421/b9129cce/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090421/b9129cce/attachment-0001.jpe -------------- next part -------------- A non-text attachment was scrubbed... Name: The Natural Authority of Families.doc Type: application/msword Size: 30720 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090421/b9129cce/attachment-0001.doc From familyvoices at inpress.pledgonline.com Tue Apr 21 03:09:29 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Tue, 21 Apr 2009 20:09:29 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <000d01c9c214$48558b30$d900a190$@Speed@mamre.org.au> References: <000d01c9c214$48558b30$d900a190$@Speed@mamre.org.au> Message-ID: Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? _____ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090421/4474604d/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090421/4474604d/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Tue Apr 21 14:37:45 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 05:37:45 +0800 Subject: FV: Early Intervention from Meg Sweeney References: <000d01c9c214$48558b30$d900a190$@Speed@mamre.org.au> Message-ID: Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career..not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ------------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ------------------------------------------------------------------------------ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us.we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind..I agree..Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience..its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ...I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ------------------------------------------------------------------------------ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ------------------------------------------------------------------------------ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ------------------------------------------------------------------------------ I am using the Free version of SPAMfighter. We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ------------------------------------------------------------------------------ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ------------------------------------------------------------------------------ Get the new Windows Live Messenger. Looking for a fresh way to share photos? ------------------------------------------------------------------------------ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/d820b9db/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/d820b9db/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Tue Apr 21 19:23:19 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 10:23:19 +0800 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: <000d01c9c214$48558b30$d900a190$@Speed@mamre.org.au> Message-ID: <000001c9c2f1$4da055b0$e8e10110$@com> Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? _____ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/768f59a3/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/768f59a3/attachment-0001.jpe -------------- next part -------------- A non-text attachment was scrubbed... Name: Final draft autism paper_12-12-07d.doc Type: application/msword Size: 137216 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/768f59a3/attachment-0001.doc From familyvoices at inpress.pledgonline.com Tue Apr 21 19:34:05 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 12:34:05 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <000001c9c2f1$4da055b0$e8e10110$@com> References: <000d01c9c214$48558b30$d900a190$@Speed@mamre.org.au> <000001c9c2f1$4da055b0$e8e10110$@com> Message-ID: Okay, so who's going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, "specialist early intervention" which sounds "oh so high tech and scientific" - isn't. No surprise to you but incredibly surprising to those who claim to be evidence-based "professionals". A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O'Sullivan, we also examined "early intervention" on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of "early intervention and educational" practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career......not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us...we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind....I agree......Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience....its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there .....I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ________________________________ ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ________________________________ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ________________________________ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ Get the new Windows Live Messenger. 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Name: not available Type: image/jpeg Size: 36313 bytes Desc: image001.jpg Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/818affb8/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Tue Apr 21 19:44:04 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 12:14:04 +0930 Subject: FV: ***SPAM*** Re: Early Intervention from Meg Sweeney References: <000d01c9c214$48558b30$d900a190$@Speed@mamre.org.au> Message-ID: Great writing Meg! Having worked in the "early intervention' world for many years witnessing all that you have written, and trying to match that with my own experiences and belief about family relationships, has led me to think we should do away with the term 'early intervention'! Early intervention was developed 30+ years ago when children with a disability were no longer going into institutions, staying at home with their families, living longer and therapies were beginning to have an accepted place in the general 'treatment' community. So early intervention was a great move forward to support and encourage families when previously the information given to them was 'put your child in an institution so you can get on with your life!. What we have learned over the last 10 - 15 years is the critical nature of the child/parent relationship for the wholesome development of children and families, but this has not fully included families who have a son or daughter with a disability - the teaching, training, therapy as you say, is often given priority. We have got 'stuck' with this 1970's concept and need to move to 2009, getting right away from working from a base of difference and 'special'. All children and their families need all the stuff we know about in developing strong and lasting relationships, in the way that we know is best, so why have an added layer for families who have a child who has a disability that can be disruptive to the the development of nurturing, lifelong relationships? Many families might feel lost and alone without the created and introduced term 'early intervention' because they have been led to believe that it is an essential element of their new life and language as a parent of a 'special child.' Excluding the term 'early intervention', and working from an inclusive basis, these families would have the opportunity to realise that their family's/child's needs should and can be met with the same knowledge, information, support and resources that are available to all families and children in their community. If we get this early bit right, then these families will continue to expect and challenge community to meet their child's lifelong needs and development through typical community experiences and opportunities. Thanks Meg for the opportunity to continue this conversation Jill ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Wednesday, April 22, 2009 7:07 AM Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career..not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ---------------------------------------------------------------------------- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ---------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us.we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind..I agree..Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience..its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ...I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ---------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ---------------------------------------------------------------------------- ---------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ---------------------------------------------------------------------------- From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ---------------------------------------------------------------------------- I am using the Free version of SPAMfighter. We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ---------------------------------------------------------------------------- Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ---------------------------------------------------------------------------- Get the new Windows Live Messenger. Looking for a fresh way to share photos? ---------------------------------------------------------------------------- Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/163559cc/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/163559cc/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Tue Apr 21 21:04:56 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 14:04:56 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <000001c9c2f1$4da055b0$e8e10110$@com> Message-ID: Great comments Meg I am also with you on the CARER term. Ugh, only that the $50 per week we get from Mr Rudd comes in handy I haven?t yet sent my resignation as a Carer. There is a major problem when you fall into the world of physical disability. Because then you are well and truly at the mercy of the early intervention centres, non-profits and/or the service providers. You cannot apply for any assistance without the sign off of one of these Government funded services. You have to prove why your child is worthy of them signing off on your request and then in NSW you are advised by the PADP officers you should be grateful you received assistance for a wheelchair. Mobility and Access needs to be removed from the concepts of Disability. I personally believe individualised funding needs to occur from the outset. If a child is determined to have significant mobility issues then they should be provided an allowance to assist with the purchase of required equipment and/or therapy. (Mac?s manual wheelchair runs in at about $9K because he has such significant support needs). I have attached my introductory comments to the Carer Inquiry last year (when I had to suck it up and refer to myself as a carer :-) ? I can?t believe I wasn?t asked to appear at their regional meetings). It gives an insight into the frustrations we face as a result of the inefficiencies that exist at every level of the current system in Australia and Shawn & I are quite able to take care of ourselves and assess and reassess constantly ? I absolutely worry for those that are not. Cheers Gina PS I was going to thank you for the top-soil we received from Wagga last week ? but from your comments it seems it was sent via Airmail from SA & WA _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? _____ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! __________ Information from ESET NOD32 Antivirus, version of virus signature database 4026 (20090421) __________ 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 1497 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/70f05369/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/70f05369/attachment-0001.jpe -------------- next part -------------- A non-text attachment was scrubbed... Name: CarerInquiry PartA.pdf Type: application/pdf Size: 1480691 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/70f05369/attachment-0001.pdf From familyvoices at inpress.pledgonline.com Tue Apr 21 22:47:44 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 15:47:44 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: Message-ID: Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? _____ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! __________ Information from ESET NOD32 Antivirus, version of virus signature database 4026 (20090421) __________ 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 1497 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/c30cf955/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/c30cf955/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Wed Apr 22 02:54:46 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 19:54:46 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <000001c9c2f1$4da055b0$e8e10110$@com> References: <000d01c9c214$48558b30$d900a190$@Speed@mamre.org.au> <000001c9c2f1$4da055b0$e8e10110$@com> Message-ID: <59D8987B1F3844CFAD6E5980A7D38261@dell91> HI all Wow Meg I think when I got to paragraph 3 the tears were there, the memories of what could have been, I was in a little country town the girl from the city who had two children and one of those was different. Thank god I had huge blinkers on back then and was totally focused on being a mother. That was not good management just how I saw it. School bus 90 klms to town big brother was on the bus going to school so Sarah time for going to preschool. We didn?t ask questions we just did. Piece of rope, car seat next to the bus driver off you go. It happened I am sure now looking back they thought I was off the planet. I didn?t care because it just wasn?t on my radar. Since that time I now work in the sector with families and see what Early Intervention doesn?t do so thank you for all your words. It has been great confirmation what has been sitting in my heart. 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: Wednesday, April 22, 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? _____ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! __________ Information from ESET NOD32 Antivirus, version of virus signature database 4026 (20090421) __________ 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: 8.0.238 / Virus Database: 270.12.2/2072 - Release Date: 04/21/09 16:48:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/8aee1933/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/8aee1933/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Wed Apr 22 05:23:55 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 20:23:55 +0800 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: Message-ID: <000501c9c345$3497c090$9dc741b0$@net.au> That is amazing, wonderful, and beautiful, Gina...thanks for sharing the love... Jaquie (very tired from caching up with all the marking I didn?t do while I was in Canada...) From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 1:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? _____ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! __________ Information from ESET NOD32 Antivirus, version of virus signature database 4026 (20090421) __________ 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 1497 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/9a549a51/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/9a549a51/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Wed Apr 22 05:49:45 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 20:49:45 +0800 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: <000001c9c2f1$4da055b0$e8e10110$@com> Message-ID: <002101c9c348$d0436870$70ca3950$@net.au> Gina, you have a wondrous way with words and presentation ? it is so powerful and I am wondering who was in the Carers Inquiry audience and what feedback you received ? I want the Prime Minister and every politician to see this, no, I actually want them to feel it as I did. Thank you Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great comments Meg I am also with you on the CARER term. Ugh, only that the $50 per week we get from Mr Rudd comes in handy I haven?t yet sent my resignation as a Carer. There is a major problem when you fall into the world of physical disability. Because then you are well and truly at the mercy of the early intervention centres, non-profits and/or the service providers. You cannot apply for any assistance without the sign off of one of these Government funded services. You have to prove why your child is worthy of them signing off on your request and then in NSW you are advised by the PADP officers you should be grateful you received assistance for a wheelchair. Mobility and Access needs to be removed from the concepts of Disability. I personally believe individualised funding needs to occur from the outset. If a child is determined to have significant mobility issues then they should be provided an allowance to assist with the purchase of required equipment and/or therapy. (Mac?s manual wheelchair runs in at about $9K because he has such significant support needs). I have attached my introductory comments to the Carer Inquiry last year (when I had to suck it up and refer to myself as a carer J ? I can?t believe I wasn?t asked to appear at their regional meetings). It gives an insight into the frustrations we face as a result of the inefficiencies that exist at every level of the current system in Australia and Shawn & I are quite able to take care of ourselves and assess and reassess constantly ? I absolutely worry for those that are not. Cheers Gina PS I was going to thank you for the top-soil we received from Wagga last week ? but from your comments it seems it was sent via Airmail from SA & WA _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? _____ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! __________ Information from ESET NOD32 Antivirus, version of virus signature database 4026 (20090421) __________ 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 1497 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/bcd3dc8f/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/bcd3dc8f/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Wed Apr 22 05:57:42 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 22:57:42 +1000 Subject: FV: Reciprocal visit and inclusion movement In-Reply-To: References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> Message-ID: <000a01c9c349$ec757780$c5606680$@com> HI all, Could we have a bit of an idea of any conferences/gatherings that are occurring in all states? I don't think CRU will be doing their conference next year, and I'd need to check with parent to parent about what they have planned but otherwise Queensland may not have anything going conference-wise in that time frame. We'd certainly have lots to offer in terms of meeting families, good examples of service, leadership development and parent/family run initiatives. Do the other states apart from NSW and VIC have anything coming up? Are there other ideas about a visit format that people might want to contribute? I'm happy to compile all the ideas and we could discuss further here, or at the teleconference. I've had a number of people who didn't travel, very interested in being involved in the teleconference. I'm keen to hear how we could get information to them either prior or at the time, and what you think the agenda might be? Loving the discussions, by the way. Anita S 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. 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URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/e5dc8e8d/attachment-0001.html From familyvoices at inpress.pledgonline.com Wed Apr 22 06:08:52 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Wed, 22 Apr 2009 23:08:52 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <002101c9c348$d0436870$70ca3950$@net.au> Message-ID: Hi Jo It was purely a paper submission on my part, and sadly no, I didn?t get invited to speak at the follow up hearings ? I figured maybe because I was just a ?wee bit? too confrontational that I probably didn?t even make a short list :-) ? As I understand there was also an extremely high number of submissions to this enquiry. One of our friends did get invited to go to the Sydney session from memory. Our Local Federal Member (who Shawn worked for at the time) did try, without success, to get regional hearings, particularly in the Shoalhaven ? I can?t quite remember but think they had one in Albury but we couldn?t make it and had the same problem with the Sydney session it was on a date that we had a conflict with. But thanks all the same ? it would have been fun to watch some squirming. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 10:50 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Gina, you have a wondrous way with words and presentation ? it is so powerful and I am wondering who was in the Carers Inquiry audience and what feedback you received ? I want the Prime Minister and every politician to see this, no, I actually want them to feel it as I did. Thank you Jo From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great comments Meg I am also with you on the CARER term. Ugh, only that the $50 per week we get from Mr Rudd comes in handy I haven?t yet sent my resignation as a Carer. There is a major problem when you fall into the world of physical disability. Because then you are well and truly at the mercy of the early intervention centres, non-profits and/or the service providers. You cannot apply for any assistance without the sign off of one of these Government funded services. You have to prove why your child is worthy of them signing off on your request and then in NSW you are advised by the PADP officers you should be grateful you received assistance for a wheelchair. Mobility and Access needs to be removed from the concepts of Disability. I personally believe individualised funding needs to occur from the outset. If a child is determined to have significant mobility issues then they should be provided an allowance to assist with the purchase of required equipment and/or therapy. (Mac?s manual wheelchair runs in at about $9K because he has such significant support needs). I have attached my introductory comments to the Carer Inquiry last year (when I had to suck it up and refer to myself as a carer :-) ? I can?t believe I wasn?t asked to appear at their regional meetings). It gives an insight into the frustrations we face as a result of the inefficiencies that exist at every level of the current system in Australia and Shawn & I are quite able to take care of ourselves and assess and reassess constantly ? I absolutely worry for those that are not. Cheers Gina PS I was going to thank you for the top-soil we received from Wagga last week ? but from your comments it seems it was sent via Airmail from SA & WA _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. Looking for a fresh way to share photos? _____ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! __________ Information from ESET NOD32 Antivirus, version of virus signature database 4026 (20090421) __________ 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 1497 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 1497 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/72a2de01/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090422/72a2de01/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Wed Apr 22 17:26:08 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 23 Apr 2009 10:26:08 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: Message-ID: Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It's begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina's, Jill's and Miriam's thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you've got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he 'just knows stuff'. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac's classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park - his reason for choosing that party venue... because he thinks Mac will like the animals... amazing, wonderful, beautiful. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who's going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, "specialist early intervention" which sounds "oh so high tech and scientific" - isn't. No surprise to you but incredibly surprising to those who claim to be evidence-based "professionals". A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O'Sullivan, we also examined "early intervention" on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of "early intervention and educational" practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career......not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us...we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind....I agree......Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience....its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there .....I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ________________________________ ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ________________________________ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ________________________________ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ Get the new Windows Live Messenger. Looking for a fresh way to share photos? ________________________________ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! __________ Information from ESET NOD32 Antivirus, version of virus signature database 4026 (20090421) __________ 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 1497 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090423/058b592d/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: image001.jpg Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090423/058b592d/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Wed Apr 22 17:32:23 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 23 Apr 2009 00:32:23 +0000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: Message-ID: <1527177766-1240446779-cardhu_decombobulator_blackberry.rim.net-1252393182-@bxe1008.bisx.prodap.on.blackberry> Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus -----Original Message----- From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It's begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina's, Jill's and Miriam's thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you've got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he 'just knows stuff'. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac's classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park - his reason for choosing that party venue... because he thinks Mac will like the animals... amazing, wonderful, beautiful. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who's going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, "specialist early intervention" which sounds "oh so high tech and scientific" - isn't. No surprise to you but incredibly surprising to those who claim to be evidence-based "professionals". A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O'Sullivan, we also examined "early intervention" on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of "early intervention and educational" practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career......not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us...we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind....I agree......Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience....its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there .....I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ________________________________ ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ________________________________ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ________________________________ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ Get the new Windows Live Messenger. Looking for a fresh way to share photos? ________________________________ Click Here View photos of singles in your area !DSPAM:585,49ec89a0301203922312791! __________ Information from ESET NOD32 Antivirus, version of virus signature database 4026 (20090421)__________ 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 1497 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090423/5178e352/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: image001.jpg Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090423/5178e352/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Wed Apr 22 17:35:05 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 23 Apr 2009 10:35:05 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <1527177766-1240446779-cardhu_decombobulator_blackberry.rim.net-1252393182-@bxe1008.bisx.prodap.on.blackberry> References: <1527177766-1240446779-cardhu_decombobulator_blackberry.rim.net-1252393182-@bxe1008.bisx.prodap.on.blackberry> Message-ID: As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus ________________________________ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It's begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina's, Jill's and Miriam's thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you've got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he 'just knows stuff'. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac's classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park - his reason for choosing that party venue... because he thinks Mac will like the animals... amazing, wonderful, beautiful. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who's going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, "specialist early intervention" which sounds "oh so high tech and scientific" - isn't. No surprise to you but incredibly surprising to those who claim to be evidence-based "professionals". A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O'Sullivan, we also examined "early intervention" on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of "early intervention and educational" practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career......not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us...we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind....I agree......Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience....its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there .....I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ________________________________ ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ________________________________ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ________________________________ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ Get the new Windows Live Messenger. 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Name: not available Type: image/jpeg Size: 36313 bytes Desc: image001.jpg Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090423/e72655ff/attachment-0001.jpe -------------- next part -------------- A non-text attachment was scrubbed... Name: ECIA NSW Conf09 Call for papers.pdf Type: application/octet-stream Size: 174911 bytes Desc: ECIA NSW Conf09 Call for papers.pdf Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090423/e72655ff/attachment-0001.obj From familyvoices at inpress.pledgonline.com Wed Apr 22 19:10:49 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 23 Apr 2009 12:10:49 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: Message-ID: FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn?t really a point to it more food for thought as I try to understand what has/can change in this area. As always with me not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the ?on-line support group? which has been around in a fairly significant format for the last decade. This takes the old adage ?it takes a village to raise a child? to a whole new level. I know I am often accused by my family a going for ?global domination? (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially ?stalked? him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac?s early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy ? there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, ?alternative treatments for brain injuries?, ?tube feeding groups?, ?organic food groups?, acquired brain injury groups (although I found too much snobbery in the Acq.BI group ? I didn?t realise there were people out there with a sense that if you ?acquire? a brain injury you see yourself as ?superior? to someone born with a brain injury or disability an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don?t often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis ? but you are a cyber group. These types of groups help you maintain your ?real life? relationships because you are seeking out supports specific to your child?s (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily ?because you both have a child with CP?, more because you have found someone you would, had you met in ?real life?, probably have been friends with anyway. On-line groups remove the ?distance barriers? they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the ?fear factor? many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how ?sane? I wouldn?t be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac?s school journey and contribute to a group blog called ?equal not special?. I have recently been reunited with my old original cyber group friends on Facebook ? time has not diminished the camaraderie we feel for one another, although our ?need? for one another has gone. I plan to establish on-line sites to help Mac and others with ?No Voice? where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage ? I think my family is right ? I am going for global domination So are their any risks to online supports? Sure someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back :-) But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the ?real world? ? so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing ? it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) ? they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? ? the family had given them my name as someone who might know what to do:-)) I had my spare pump at home so dropped it round, trained the family etc. Mac?s feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn?t know what to do, Sydney Children?s hosp were not much better when I called them ? their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a ?spare tube? from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac?s new tube to arrive. We have since had to share one of Mac?s spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say ?No? a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn?t it be nice to think that one day, having a disability will be so inconsequential there will not be a ?disability industry? only the tail end of an ?inclusion industry?. Meg, I see your ?long wind-ed-ness? and up you with ?exhorbitently wordyness?. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus _____ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It?s begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina?s, Jill?s and Miriam?s thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you?ve got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. 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URL: http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090423/cb666bf5/attachment-0001.html -------------- next part -------------- A non-text attachment was scrubbed... Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090423/cb666bf5/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Wed Apr 22 19:21:30 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 23 Apr 2009 11:51:30 +0930 Subject: FV: ***SPAM*** Re: Early Intervention from Meg Sweeney References: Message-ID: <9F7D009D29AD483F807ACE2DF4480AD8@jw> Hi All This is a great idea! If it is helpful, I'm happy to be involved with others to get the abstract/paper in. A focus on the parent/child attachment stream might be worth considering as it is so topical in early childhood development and is a main thread of our family voices conversations. The academic/research knowledge about secure attachment is often presented but to have the real experiences and stories from families would be fantastic! Jill ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Thursday, April 23, 2009 9:56 AM Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It's begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina's, Jill's and Miriam's thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you've got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he 'just knows stuff'. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac's classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park - his reason for choosing that party venue. because he thinks Mac will like the animals. amazing, wonderful, beautiful. Gina ------------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who's going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, "specialist early intervention" which sounds "oh so high tech and scientific" - isn't. No surprise to you but incredibly surprising to those who claim to be evidence-based "professionals". A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O'Sullivan, we also examined "early intervention" on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of "early intervention and educational" practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career..not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ---------------------------------------------------------------------------- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ---------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us.we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind..I agree..Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience..its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ...I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ---------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ---------------------------------------------------------------------------- ---------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ---------------------------------------------------------------------------- From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ---------------------------------------------------------------------------- I am using the Free version of SPAMfighter. We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ---------------------------------------------------------------------------- Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ---------------------------------------------------------------------------- Get the new Windows Live Messenger. 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Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available Url : http://inpress.pledgonline.com/pipermail/familyvoices_inpress.pledgonline.com/attachments/20090423/5da00c68/attachment-0001.jpe From familyvoices at inpress.pledgonline.com Thu Apr 23 02:04:43 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 23 Apr 2009 19:04:43 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: Message-ID: <3FC592EA9D0047CFA6011DA7472617F6@SweeneyFamily> Gina, You are too good to be true technology and the cyber world is so weird to me however I see the great gifts it has given my children in relation to connectedness. I?m learning. I too am happy to contribute to this early intervention abstract and will have time over the next few days. I do however need direction from someone about what I need to do as I don?t have a lot of experience in providing abstracts. I can commit to presenting at the conference if the abstract is accepted. Would you be available too, perhaps a joint thing. Perhaps I give you a ring, work out stuff and get Jill to vet it with her expertise and then submit? Cheers, Meg _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 12:11 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn?t really a point to it more food for thought as I try to understand what has/can change in this area. As always with me not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the ?on-line support group? which has been around in a fairly significant format for the last decade. This takes the old adage ?it takes a village to raise a child? to a whole new level. I know I am often accused by my family a going for ?global domination? (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially ?stalked? him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac?s early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy ? there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, ?alternative treatments for brain injuries?, ?tube feeding groups?, ?organic food groups?, acquired brain injury groups (although I found too much snobbery in the Acq.BI group ? I didn?t realise there were people out there with a sense that if you ?acquire? a brain injury you see yourself as ?superior? to someone born with a brain injury or disability an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don?t often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis ? but you are a cyber group. These types of groups help you maintain your ?real life? relationships because you are seeking out supports specific to your child?s (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily ?because you both have a child with CP?, more because you have found someone you would, had you met in ?real life?, probably have been friends with anyway. On-line groups remove the ?distance barriers? they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the ?fear factor? many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how ?sane? I wouldn?t be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac?s school journey and contribute to a group blog called ?equal not special?. I have recently been reunited with my old original cyber group friends on Facebook ? time has not diminished the camaraderie we feel for one another, although our ?need? for one another has gone. I plan to establish on-line sites to help Mac and others with ?No Voice? where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage ? I think my family is right ? I am going for global domination So are their any risks to online supports? Sure someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back :-) But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the ?real world? ? so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing ? it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) ? they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? ? the family had given them my name as someone who might know what to do:-)) I had my spare pump at home so dropped it round, trained the family etc. Mac?s feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn?t know what to do, Sydney Children?s hosp were not much better when I called them ? their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a ?spare tube? from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac?s new tube to arrive. We have since had to share one of Mac?s spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say ?No? a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn?t it be nice to think that one day, having a disability will be so inconsequential there will not be a ?disability industry? only the tail end of an ?inclusion industry?. Meg, I see your ?long wind-ed-ness? and up you with ?exhorbitently wordyness?. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus _____ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It?s begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina?s, Jill?s and Miriam?s thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you?ve got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. 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Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Thu Apr 23 04:57:38 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 23 Apr 2009 21:57:38 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <3FC592EA9D0047CFA6011DA7472617F6@SweeneyFamily> Message-ID: Hi Meg Yep, I am happy to work with you on it and don?t see any problems with dates should an abstract be accepted. Contact numbers below. I think I am having lunch with one of my girlfriends tomorrow to try and rework (or at least get hour heads somewhat around) the IEPs for our respective children so we can be a little bit better prepared for meetings etc when we get back to our schools next week. Other than that I am pretty right ? just finishing up BAS for the business tonight. Cheers 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: Thursday, 23 April 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Gina, You are too good to be true technology and the cyber world is so weird to me however I see the great gifts it has given my children in relation to connectedness. I?m learning. I too am happy to contribute to this early intervention abstract and will have time over the next few days. I do however need direction from someone about what I need to do as I don?t have a lot of experience in providing abstracts. I can commit to presenting at the conference if the abstract is accepted. Would you be available too, perhaps a joint thing. Perhaps I give you a ring, work out stuff and get Jill to vet it with her expertise and then submit? Cheers, Meg _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 12:11 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn?t really a point to it more food for thought as I try to understand what has/can change in this area. As always with me not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the ?on-line support group? which has been around in a fairly significant format for the last decade. This takes the old adage ?it takes a village to raise a child? to a whole new level. I know I am often accused by my family a going for ?global domination? (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially ?stalked? him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac?s early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy ? there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, ?alternative treatments for brain injuries?, ?tube feeding groups?, ?organic food groups?, acquired brain injury groups (although I found too much snobbery in the Acq.BI group ? I didn?t realise there were people out there with a sense that if you ?acquire? a brain injury you see yourself as ?superior? to someone born with a brain injury or disability an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don?t often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis ? but you are a cyber group. These types of groups help you maintain your ?real life? relationships because you are seeking out supports specific to your child?s (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily ?because you both have a child with CP?, more because you have found someone you would, had you met in ?real life?, probably have been friends with anyway. On-line groups remove the ?distance barriers? they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the ?fear factor? many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how ?sane? I wouldn?t be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac?s school journey and contribute to a group blog called ?equal not special?. I have recently been reunited with my old original cyber group friends on Facebook ? time has not diminished the camaraderie we feel for one another, although our ?need? for one another has gone. I plan to establish on-line sites to help Mac and others with ?No Voice? where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage ? I think my family is right ? I am going for global domination So are their any risks to online supports? Sure someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back :-) But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the ?real world? ? so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing ? it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) ? they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? ? the family had given them my name as someone who might know what to do:-)) I had my spare pump at home so dropped it round, trained the family etc. Mac?s feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn?t know what to do, Sydney Children?s hosp were not much better when I called them ? their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a ?spare tube? from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac?s new tube to arrive. We have since had to share one of Mac?s spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say ?No? a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn?t it be nice to think that one day, having a disability will be so inconsequential there will not be a ?disability industry? only the tail end of an ?inclusion industry?. Meg, I see your ?long wind-ed-ness? and up you with ?exhorbitently wordyness?. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus _____ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It?s begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina?s, Jill?s and Miriam?s thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you?ve got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. 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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 Apr 23 15:28:14 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 24 Apr 2009 08:28:14 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <3FC592EA9D0047CFA6011DA7472617F6@SweeneyFamily> References: <3FC592EA9D0047CFA6011DA7472617F6@SweeneyFamily> Message-ID: The flier details what you need to do re the abstract. Most conference organisers are quite particular in how that want abstracts presented, so in order to give yourselves the best possible chance of the abstract being accepted, it must go in the format that they request. Happy to assist with this if needed. Regards Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 7:05 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Gina, You are too good to be true......technology and the cyber world is so weird to me however I see the great gifts it has given my children in relation to connectedness. I'm learning. I too am happy to contribute to this early intervention abstract and will have time over the next few days. I do however need direction from someone about what I need to do as I don't have a lot of experience in providing abstracts. I can commit to presenting at the conference if the abstract is accepted. Would you be available too, perhaps a joint thing. Perhaps I give you a ring, work out stuff and get Jill to vet it with her expertise and then submit? Cheers, Meg ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 12:11 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn't really a point to it more food for thought as I try to understand what has/can change in this area. As always with me... not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the 'on-line support group' which has been around in a fairly significant format for the last decade. This takes the old adage "it takes a village to raise a child" to a whole new level. I know I am often accused by my family a going for "global domination" (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially 'stalked' him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac's early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy - there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, 'alternative treatments for brain injuries', 'tube feeding groups', 'organic food groups', acquired brain injury groups (although I found too much snobbery in the Acq.BI group - I didn't realise there were people out there with a sense that if you "acquire" a brain injury you see yourself as 'superior' to someone born with a brain injury or disability... an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don't often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis - but you are a cyber group. These types of groups help you maintain your "real life" relationships because you are seeking out supports specific to your child's (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily "because you both have a child with CP", more because you have found someone you would, had you met in 'real life', probably have been friends with anyway. On-line groups remove the 'distance barriers' they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the 'fear factor' many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how "sane" I wouldn't be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac's school journey and contribute to a group blog called "equal not special". I have recently been reunited with my old original cyber group friends on Facebook - time has not diminished the camaraderie we feel for one another, although our "need" for one another has gone. I plan to establish on-line sites to help Mac and others with 'No Voice" where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage - I think my family is right - I am going for global domination... So are their any risks to online supports? Sure... someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back J But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the "real world" - so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing - it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) - they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? - the family had given them my name as someone who might know what to doJ) I had my spare pump at home so dropped it round, trained the family etc. Mac's feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn't know what to do, Sydney Children's hosp were not much better when I called them - their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a 'spare tube' from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac's new tube to arrive. We have since had to share one of Mac's spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends... say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say 'No' a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn't it be nice to think that one day, having a disability will be so inconsequential there will not be a 'disability industry' only the tail end of an 'inclusion industry'. Meg, I see your 'long wind-ed-ness' and up you with 'exhorbitently wordyness'. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus ________________________________ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It's begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina's, Jill's and Miriam's thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you've got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he 'just knows stuff'. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac's classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park - his reason for choosing that party venue... because he thinks Mac will like the animals... amazing, wonderful, beautiful. Gina ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who's going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, "specialist early intervention" which sounds "oh so high tech and scientific" - isn't. No surprise to you but incredibly surprising to those who claim to be evidence-based "professionals". A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O'Sullivan, we also examined "early intervention" on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of "early intervention and educational" practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career......not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ________________________________ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us...we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind....I agree......Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience....its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there .....I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ________________________________ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ________________________________ ________________________________ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ________________________________ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ________________________________ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ________________________________ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ________________________________ Get the new Windows Live Messenger. 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Name: not available Type: image/jpeg Size: 36313 bytes Desc: image001.jpg URL: From familyvoices at inpress.pledgonline.com Fri Apr 24 01:50:55 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 24 Apr 2009 18:50:55 +1000 Subject: FV: What I learned from Canada and the brick wall I hit when I got home Message-ID: Hello Sheree, It's always a difficult task to turn vision to reality, for all of us. Sometimes it gets easier over time as your own thinking develops and you recognise opportunities that you were blind to before. However as Jo and Gina have mentioned we all remain vigilant to protect what is established as it can be undermined in a flash. Much of the research you no doubt found extolled the virtues of inclusive education as a superior education however often missing is the practical knowledge of how to get it. I'd like to share some stuff that I have found successful both in our life and others known to me. As you know we are in the process of moving so are in the same boat as you at the present time in relation to choosing a school. Inclusion is just a word. A word developed to describe the opposite of what most people with disability experience which is exclusion. Unfortunately the word inclusion has come to mean a lot of things to a lot of people that makes its use complicated and difficult. In an educational context the term inclusion to schools and staff usually means militant, radical, no support, mainstream dumping, irrational expectations, union involvement, seen this before, never work, more work, no experience Etc. Etc. I think Jill, Maureen and Anita have all mentioned the phrase a good life in the community. I have found this is a much better term to use when I talk to educational personnel, schools and teachers than inclusion. 'I want my children to have a good life in the community and a part of that for Jos is to attend the same school as her brother and sister, neighbours and friends as a fully participating student in regular class'. It generalises the issue and takes out the ideology that can get peoples backs up. Segregated thinking sees people being assessed and then a placement, programme or facility is identified to cater for the deficits of the individual. Inclusive community thinking is the opposite. Starting first with the family and child. In choosing a school the questions are: Where do my other children go? Do we as a family have strong religious, philosophical or political views? Where do the kids in the neighbourhood go? In essence where would Isaac be at school if he did not have a disability? If you have a few schools in mind, get the school prospectus and see what they say about themselves. Think through the reasons why a particular school will give your son a better life in the community and write it down. Inclusive education is just a small part of an inclusive life. The school our children attend has to be congruent with the rest of their lives. Being at a school with brothers and sisters, cousins, neighbourhood children, children of friends, near your work place, of your faith, makes sense in ways that are ordinary and where ordinary belonging on many levels for Isaac awaits. It will also increase the opportunity for casual out of school involvement and is more likely to be easier for you in terms of location to home and work etc. which increases long term sustainability. Looking for a school that does inclusion well is problematic as firstly I have yet to find one that exists, sorry Darryl. Even if a school includes 1 child well they often exclude others indicating that it is the relationship that the family and child have with the school and the level of natural belonging that the child has to draw on that is the key to better outcomes. Secondly looking for a school that 'does inclusion' is similar to the segregated thinking in that it is looking for a placement, programme or facility rather than looking at the child and family and natural community belonging. Sadly inclusion can become another thing that is done to someone and usually the outcomes are not overly good or long term. Most schools will give you the cold shoulder....be ready with the rationale about why you have selected the school and then assist the school negotiate for the support. All schools can include children. They just need the opportunity and some experience. It's hard to think that a school may experiment on your own child while they learn however I know that even though this has been the case during Joscelyn's whole school career her education, life, community belonging and sense of self would never have developed as well in a segregated setting. It's daunting and scary however the school is your choice....just like it would be if Isaac didn't have a disability. As far as unjustifiable hardship goes, many student with very high and complex needs have been and are included in regular class in most states of Australia so educational departments would find it very difficult to argue this one in today. There is both State and federal law that can assist you if you need it. As far as I know the in the cases that educational settings have been successful in excluding a student by law for unjustifiable hardship the students have had quite significant behaviour issues that have lead to teacher or student danger. I personally so not feel this is a reason to exclude as students with behaviour issues are fine if they are supported well by people who know them as the behaviour is usually a communication tool. If schools raise this it will probably be as a bluff to get you to back down so have a few examples ready of students you are aware of that are supported in regular class elsewhere thus indication that they are the problem not your son. I'm sure Darryl would be happy to oblige and Family Advocacy in Sydney could give you a few examples too. As others have said don't go alone to any meeting, safety in numbers. Try to enlist the support of family, friends and workmates in what you want for your son. Letting others into your life and that of your son is difficult however you need support and you may be surprised who will step forward to assist you in making your vision a reality. I have always found less 'nay sayers' (loved that) amongst typical people who naturally agree that you would want a good life in the community for your son.....don't we all. I'm happy to have a chat on the phone if you like in relation to the pros and cons of schools you may be thinking about, the dept processes and how to potentially manoeuvre them, in preparation for meetings, debriefing after or any other assistance. Cheers Meg 02 6926 3888 0412 481 814 ----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 1:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What I learned from Canada and the brick wall Ihit whenI gothome Sheree - do you have anyone that you can take with you when talking to schools? The nature and tone of conversations can be quite different when someone is with you whether its your partner or friend/supporter who knows what you're on about. This experience can be quite daunting and isolating so please don't do it on your own. You need to be prepared for resistance, but try and implore to them that they don't have to have the answers straight away on how to do, just the willingness to give it a really good go. You have good reason to fear these things, but you need to go into it with a positive frame of mind showing how wonderful this person is, and how lucky they are to have the opportunity to educate him. That can be contagious. You can all work together to nut out the hows as you go along. Good luck girl - this is one of the toughest times and better times are to come. Hang in there and use the expertise and support that you have available to you. Take care Anita -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 1:11 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What I learned from Canada and the brick wall I hit whenI gothome Thanks Anita. That sheet confirms that I have been doing all the right things. I have done up a list of priorities and ranked them. I have done a little booklet about Isaac - how to communicate with him, what he likes and dislikes, what he has skills in, etc. I feel well armed for discussions with schools. I just fear that there will be no school in Canberra that will have him and that just makes me so very sad that noone will see his education other than an unjustifiable hardship. 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. -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 1:00 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What I learned from Canada and the brick wall I hit whenI gothome HI Sheree and everyone, Here is the preparing for high school doc that Bob Jackson wrote which I mentioned earlier. He suggests making an introductory booklet and as mentioned, we did a website instead which could be another way to do it. Hope it helps. Best wishes Anita -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 7 April 2009 10:03 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What I learned from Canada and the brick wall I hit when I gothome Hi - Jacquie, that's great advice. We went a step further and set up a website for Dale. Have a look at www.dalespeed.com. The purpose of the website was to introduce Dale to his high school. Teachers and students access it and some of the teachers use it as part of his English lessons. There is a place in the website where support needs are documented but people have to have a password to access it. We found that teachers saw Dale in a different light because he is so much more than his disability. With your tech expertise Sheree, I'm sure you can do a fab job of that!. Also, Dale is very proud of his website and some of his school work involves updating it. Great way to practice constructing sentences and developing his computer skills... Anyone is welcome to lift any ideas. It needs updating to include Dale's Canadian experience but you get the idea when you see it... Also, Bob Jackson gave me some great info on how to prepare for high school. I'll try and find it and post it here if I can. That will be later tonight though (unless Darrell has it sooner?) Take care Anita 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. -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 7 April 2009 9:20 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What I learned from Canada and the brick wall I hit when I gothome HI Sheree Awesome email and thoughts. One of the things you can do is use your marketing expertise to enrol teachers in your vision for an inclusive education for Isaac. Think about what strategies you would use to market a new product to an audience who hadn't come across it before. I teach high school teachers about inclusion and one of the striking things is how many of them have never even met a person with a significant disability. We have a program where they must go into the community and spend at least three day with people with disabilities, and their reflections when they return from this experience are very much along the lines of - this was SO confronting, I had no idea what to do or say, I wanted to leave, but by the end of three days I had made connections and wasn't so afraid. This is useful information...of course if we ask a teacher who has had either no contact or negative experience of disability, who may not be coping with their classes as it is, to take on a scary kid with complicated needs they are going to freak out! One way forward which I have found works really well is to design a really sound ...well, marketing document for want of a better word which clearly lays out what the teacher needs to know and the expectations you have. This is especially important in high school where there are so many teachers. I don't know if you saw my presentation at the conference but I shared a bit of what such a document looks like and some of the powerful effects in a hostile system kind of context. Have a look at Essential Lifestyle Planning at www.elp.net - this is the foundation we use in Vela Microboards Australia to good effect so far. Sheree - I'm keen to take a holiday in the ACT now I have some friends there...if I may be so presumptious...maybe we could get together before next year and do some strategic planning. Jaquie :) -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Tuesday, 7 April 2009 6:49 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: What I learned from Canada and the brick wall I hit when I gothome HI Sheree You are doing a great job. You are on the road to a inclusive life for Isaac. Just a quick thought, can you go the the SPECIAL school and meet with some of the parents? They maybe the ones who will know where inclusive practice is happening in schools. It sort of going in the back door to get to the front gate. I love the picture in day of a parent with a child with a disability. Maybe that could be part of a LOGO??? Have a great day. GO GIRL Kindest thoughts Jane Jane Warner/Hudson 07 46714737 Sheree, Here is a different picture: This is a picture of inclusion. Inclusion is a moral issue. It is about teaching our children to care for one another. It is not about peers being forced but peers being allowed to learn of the love of your son. Inclusion is also a technical issue. June Downing (one of the keynotes at AACL) and Tim Loreman (the Aussie for Concordia awarded for inclusion by AACL) and I have been communicating since we met up in Canada. June reported 25 years of evidence and so was intrigued when I sent her a study from 1932 and we have traced this through now 77 years of evidence where none exists to support segregation. Tim writes: "I think what you are uncovering here is extremely critical to the debate. I also sense that inclusion is not the only area in education where practices just go along on the strength of tradition etc. with little scientific evidence to support it (I think about areas like homework which, like segregation, is a widespread practice with little to support it). I think the difference is that with the whole medical model background and its link to special education educators might just have assumed that some remote medical scientist types have proven the efficacy of segregation, and then look no further (what other profession would do that?). I think you are quite right - the efficacy has clearly not been proven - not even close! It's all smoke & mirrors." So why do we it? We posit that segregation is a (im)moral habit that has been passed forward now for over 3,500 years. It is not about educational science but human beliefs. Inclusion is a "post-eugenic thought", an affair of the heart, that has existed alongside what we call "the killing thoughts" of segregation for all of this time. It is only of recent that we dare promote it as a dominate thought. We are only beginning to dare to learn the technical aspects of inclusion and let me tell you the technical findings aren't so favourable for the many human service "fixtures" you find in your drawing. In fact, much like what Maureen asserts about human service in adult world - holds true in children's human service world. Inclusion really only needs adults to interpret the acts of kindness inherent in children, shape the sophistications of their natural helping talents and not get in the way too much. One other thought to leave you with: - there is no such thing as special education. It is a code word for segregation. Children do not have special needs. They have human needs - to be loved and love, to feel safe and welcome, to move about their environments and to learn to find their place in the world. "Special" are all of those weird and wonderful things we do instead of doing this. I know these are hard thoughts when one is "in" the specially constructed world but I hope liberating from that world is to see that the "emperor of special education really has no clothes". Kindest thoughts. dw -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Monday, April 06, 2009 9:02 PM To: familyvoices at inpress.pledgonline.com Subject: FV: What I learned from Canada and the brick wall I hit when I gothome Canada was amazing. I suffered a little from information overload so I decided to focus on inclusive education as my son is about to go to secondary school next year. My brain works in pictures, so I have attached a picture that shows the model of inclusive education purported at the conference. The student with the disability is Isaac (my son). When I came home I read all the research on inclusive education I could get my hands on. Basically what I found is: . There is no research that says segregated settings for people with disabilities are better. This is because it is difficult to control variables that allow a comparison. So the policies and processes surrounding special education in Australia are based on resource availability and management, not on what is best for children. . The research around special education focuses on therapies and teaching methods, not on the location of learning. . There is an abundance of research around the benefits of inclusive education. . Inclusive education benefits all - teachers, students with a disability, peers and parents. . The Commonwealth Disability Act includes lots of good statements about inclusive education but then it finishes with "A provider can offer a defence that adjustments are unreasonable if they produce unjustifiable hardship" In the ACT the process for getting a person with disability into a school is 1. Parent meets with school counsellor to voice preferences 2. Counsellor does an Assessment of Needs and makes a recommendation to the Department of Education 3. The Department of Education assigns the student to a school I met with the school counsellor and told her I wanted him to go to an ordinary school, she thought I was crazy and didn't know which schools did inclusion well in the ACT. I have no idea how to find out which schools do inclusion well in the ACT. I suspect none. I haven't worked out how I can change that by the time my son is ready for high school in 9 months. What next? Perhaps I need to move to Canada where Isaac wont be thought of as an unjustifiable hardship. 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. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.42/2042 - Release Date: 04/05/09 10:54:00 !DSPAM:585,49da8e77283961198567559! From familyvoices at inpress.pledgonline.com Fri Apr 24 20:19:51 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 25 Apr 2009 11:19:51 +0800 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: Message-ID: <00a501c9c554$b21a69d0$164f3d70$@net.au> Thanks Gina ? cool article! Online support groups have been my lifeline too ? everything good I have learned about anything, from how to cope, how to deal with eli?s medical needs, disability theory and politics is all from online groups. The only thing which is different in my experience is I have not had the sense that size is bad or that familiarity is detrimental ? I?ve been active in the online Angelman community for 5 years and we have, I think, 1700 members and its an amazing experience. Any hour of the night or day there is another parent online who can help you. Those relationships can be real too ? our trip to Canada and the US 3 years ago to learn about how to transition Eli into an inclusive adult life was designed around meeting and staying with families we had only ever me online. It was awesome....and the genesis of the amazing life Eli has now. As a group, it is interesting how much in common attempts at early intervention are around the world, and also how universally futile....lots of us decide to just quit therapy or to redirect it after hearing the experiences of other parents. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn?t really a point to it more food for thought as I try to understand what has/can change in this area. As always with me not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the ?on-line support group? which has been around in a fairly significant format for the last decade. This takes the old adage ?it takes a village to raise a child? to a whole new level. I know I am often accused by my family a going for ?global domination? (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially ?stalked? him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac?s early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy ? there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, ?alternative treatments for brain injuries?, ?tube feeding groups?, ?organic food groups?, acquired brain injury groups (although I found too much snobbery in the Acq.BI group ? I didn?t realise there were people out there with a sense that if you ?acquire? a brain injury you see yourself as ?superior? to someone born with a brain injury or disability an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don?t often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis ? but you are a cyber group. These types of groups help you maintain your ?real life? relationships because you are seeking out supports specific to your child?s (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily ?because you both have a child with CP?, more because you have found someone you would, had you met in ?real life?, probably have been friends with anyway. On-line groups remove the ?distance barriers? they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the ?fear factor? many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how ?sane? I wouldn?t be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac?s school journey and contribute to a group blog called ?equal not special?. I have recently been reunited with my old original cyber group friends on Facebook ? time has not diminished the camaraderie we feel for one another, although our ?need? for one another has gone. I plan to establish on-line sites to help Mac and others with ?No Voice? where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage ? I think my family is right ? I am going for global domination So are their any risks to online supports? Sure someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back J But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the ?real world? ? so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing ? it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) ? they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? ? the family had given them my name as someone who might know what to doJ) I had my spare pump at home so dropped it round, trained the family etc. Mac?s feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn?t know what to do, Sydney Children?s hosp were not much better when I called them ? their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a ?spare tube? from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac?s new tube to arrive. We have since had to share one of Mac?s spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say ?No? a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn?t it be nice to think that one day, having a disability will be so inconsequential there will not be a ?disability industry? only the tail end of an ?inclusion industry?. Meg, I see your ?long wind-ed-ness? and up you with ?exhorbitently wordyness?. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus _____ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It?s begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina?s, Jill?s and Miriam?s thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you?ve got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. 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Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Fri Apr 24 20:55:40 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 25 Apr 2009 13:55:40 +1000 Subject: FV: What I learned from Canada and the brick wall I hit when I gothome In-Reply-To: References: Message-ID: <7AF2CBCC-6745-46C2-BC22-15EEA98F2558@canberra.edu.au> Thanks meg. All of that is extremely helpful. Am going to visit schools in the next few weeks and will be well armed thanks to you all. Sheree Henley Sent from my mobile On 24/04/2009, at 6:51 PM, "Family Voices" wrote: > Hello Sheree, > > It's always a difficult task to turn vision to reality, for all of us. > Sometimes it gets easier over time as your own thinking develops and > you > recognise opportunities that you were blind to before. However as Jo > and > Gina have mentioned we all remain vigilant to protect what is > established as > it can be undermined in a flash. Much of the research you no doubt > found > extolled the virtues of inclusive education as a superior education > however > often missing is the practical knowledge of how to get it. I'd like > to > share some stuff that I have found successful both in our life and > others > known to me. As you know we are in the process of moving so are in > the same > boat as you at the present time in relation to choosing a school. > > Inclusion is just a word. A word developed to describe the opposite > of what > most people with disability experience which is exclusion. > Unfortunately > the word inclusion has come to mean a lot of things to a lot of > people that > makes its use complicated and difficult. In an educational context > the term > inclusion to schools and staff usually means militant, radical, no > support, > mainstream dumping, irrational expectations, union involvement, seen > this > before, never work, more work, no experience Etc. Etc. I think Jill, > Maureen and Anita have all mentioned the phrase a good life in the > community. I have found this is a much better term to use when I > talk to > educational personnel, schools and teachers than inclusion. 'I want > my > children to have a good life in the community and a part of that for > Jos is > to attend the same school as her brother and sister, neighbours and > friends > as a fully participating student in regular class'. It generalises > the > issue and takes out the ideology that can get peoples backs up. > > Segregated thinking sees people being assessed and then a placement, > programme or facility is identified to cater for the deficits of the > individual. Inclusive community thinking is the opposite. Starting > first > with the family and child. In choosing a school the questions are: > > Where do my other children go? > Do we as a family have strong religious, philosophical or political > views? > Where do the kids in the neighbourhood go? > In essence where would Isaac be at school if he did not have a > disability? > > If you have a few schools in mind, get the school prospectus and see > what > they say about themselves. Think through the reasons why a > particular school > will give your son a better life in the community and write it down. > Inclusive education is just a small part of an inclusive life. The > school > our children attend has to be congruent with the rest of their > lives. Being > at a school with brothers and sisters, cousins, neighbourhood > children, > children of friends, near your work place, of your faith, makes > sense in > ways that are ordinary and where ordinary belonging on many levels > for Isaac > awaits. It will also increase the opportunity for casual out of > school > involvement and is more likely to be easier for you in terms of > location to > home and work etc. which increases long term sustainability. > > Looking for a school that does inclusion well is problematic as > firstly I > have yet to find one that exists, sorry Darryl. Even if a school > includes 1 > child well they often exclude others indicating that it is the > relationship > that the family and child have with the school and the level of > natural > belonging that the child has to draw on that is the key to better > outcomes. > Secondly looking for a school that 'does inclusion' is similar to the > segregated thinking in that it is looking for a placement, programme > or > facility rather than looking at the child and family and natural > community > belonging. Sadly inclusion can become another thing that is done to > someone > and usually the outcomes are not overly good or long term. > > Most schools will give you the cold shoulder....be ready with the > rationale > about why you have selected the school and then assist the school > negotiate > for the support. All schools can include children. They just need the > opportunity and some experience. It's hard to think that a school may > experiment on your own child while they learn however I know that even > though this has been the case during Joscelyn's whole school career > her > education, life, community belonging and sense of self would never > have > developed as well in a segregated setting. It's daunting and scary > however > the school is your choice....just like it would be if Isaac didn't > have a > disability. > > As far as unjustifiable hardship goes, many student with very high and > complex needs have been and are included in regular class in most > states of > Australia so educational departments would find it very difficult to > argue > this one in today. There is both State and federal law that can > assist you > if you need it. As far as I know the in the cases that educational > settings > have been successful in excluding a student by law for unjustifiable > hardship the students have had quite significant behaviour issues > that have > lead to teacher or student danger. I personally so not feel this is a > reason to exclude as students with behaviour issues are fine if they > are > supported well by people who know them as the behaviour is usually a > communication tool. If schools raise this it will probably be as a > bluff to > get you to back down so have a few examples ready of students you > are aware > of that are supported in regular class elsewhere thus indication > that they > are the problem not your son. I'm sure Darryl would be happy to > oblige and > Family Advocacy in Sydney could give you a few examples too. > > As others have said don't go alone to any meeting, safety in > numbers. Try > to enlist the support of family, friends and workmates in what you > want for > your son. Letting others into your life and that of your son is > difficult > however you need support and you may be surprised who will step > forward to > assist you in making your vision a reality. I have always found > less 'nay > sayers' (loved that) amongst typical people who naturally agree that > you > would want a good life in the community for your son.....don't we all. > > I'm happy to have a chat on the phone if you like in relation to the > pros > and cons of schools you may be thinking about, the dept processes > and how to > potentially manoeuvre them, in preparation for meetings, debriefing > after or > any other assistance. > > Cheers Meg > > 02 6926 3888 > 0412 481 814 > > > ----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > Voices > Sent: Wednesday, 8 April 2009 1:25 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What I learned from Canada and the brick wall Ihit > whenI > gothome > > Sheree - do you have anyone that you can take with you when talking to > schools? The nature and tone of conversations can be quite different > when > someone is with you whether its your partner or friend/supporter who > knows > what you're on about. This experience can be quite daunting and > isolating > so please don't do it on your own. You need to be prepared for > resistance, > but try and implore to them that they don't have to have the answers > straight away on how to do, just the willingness to give it a really > good > go. You have good reason to fear these things, but you need to go > into it > with a positive frame of mind showing how wonderful this person is, > and how > lucky they are to have the opportunity to educate him. That can be > contagious. You can all work together to nut out the hows as you go > along. > Good luck girl - this is one of the toughest times and better times > are to > come. Hang in there and use the expertise and support that you have > available to you. > Take care > Anita > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > Voices > Sent: Wednesday, 8 April 2009 1:11 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What I learned from Canada and the brick wall I hit > whenI > gothome > > Thanks Anita. That sheet confirms that I have been doing all the > right > things. I have done up a list of priorities and ranked them. I have > done a little booklet about Isaac - how to communicate with him, > what he > likes and dislikes, what he has skills in, etc. > > I feel well armed for discussions with schools. I just fear that > there > will be no school in Canberra that will have him and that just makes > me > so very sad that noone will see his education other than an > unjustifiable hardship. > > 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. > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family Voices > Sent: Wednesday, 8 April 2009 1:00 PM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What I learned from Canada and the brick wall I hit > whenI gothome > > HI Sheree and everyone, > Here is the preparing for high school doc that Bob Jackson wrote > which I > mentioned earlier. He suggests making an introductory booklet and as > mentioned, we did a website instead which could be another way to do > it. > Hope it helps. > Best wishes > Anita > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > Voices > Sent: Tuesday, 7 April 2009 10:03 AM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What I learned from Canada and the brick wall I hit > when I > gothome > > Hi - Jacquie, that's great advice. We went a step further and set up a > website for Dale. Have a look at www.dalespeed.com. The purpose of > the > website was to introduce Dale to his high school. Teachers and > students > access it and some of the teachers use it as part of his English > lessons. > There is a place in the website where support needs are documented but > people have to have a password to access it. We found that teachers > saw > Dale in a different light because he is so much more than his > disability. > With your tech expertise Sheree, I'm sure you can do a fab job of > that!. > Also, Dale is very proud of his website and some of his school work > involves > updating it. Great way to practice constructing sentences and > developing > his > computer skills... > Anyone is welcome to lift any ideas. It needs updating to include > Dale's > Canadian experience but you get the idea when you see it... > > Also, Bob Jackson gave me some great info on how to prepare for high > school. > I'll try and find it and post it here if I can. That will be later > tonight > though (unless Darrell has it sooner?) > > Take care > Anita > > > > 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. > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > Voices > Sent: Tuesday, 7 April 2009 9:20 AM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What I learned from Canada and the brick wall I hit > when I > gothome > > HI Sheree > > Awesome email and thoughts. > > One of the things you can do is use your marketing expertise to enrol > teachers in your vision for an inclusive education for Isaac. Think > about > what strategies you would use to market a new product to an audience > who > hadn't come across it before. > > I teach high school teachers about inclusion and one of the striking > things > is how many of them have never even met a person with a significant > disability. We have a program where they must go into the community > and > spend at least three day with people with disabilities, and their > reflections when they return from this experience are very much along > the > lines of - this was SO confronting, I had no idea what to do or say, I > wanted to leave, but by the end of three days I had made connections > and > wasn't so afraid. > > This is useful information...of course if we ask a teacher who has had > either no contact or negative experience of disability, who may not be > coping with their classes as it is, to take on a scary kid with > complicated > needs they are going to freak out! > > One way forward which I have found works really well is to design a > really > sound ...well, marketing document for want of a better word which > clearly > lays out what the teacher needs to know and the expectations you have. > This > is especially important in high school where there are so many > teachers. > > I don't know if you saw my presentation at the conference but I > shared a > bit > of what such a document looks like and some of the powerful effects > in a > hostile system kind of context. > > Have a look at Essential Lifestyle Planning at www.elp.net - this is > the > foundation we use in Vela Microboards Australia to good effect so far. > > Sheree - I'm keen to take a holiday in the ACT now I have some friends > there...if I may be so presumptious...maybe we could get together > before > next year and do some strategic planning. > > Jaquie :) > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > Voices > Sent: Tuesday, 7 April 2009 6:49 AM > To: familyvoices at inpress.pledgonline.com > Subject: Re: FV: What I learned from Canada and the brick wall I hit > when I > gothome > > HI Sheree > > You are doing a great job. You are on the road to a inclusive life > for > Isaac. > Just a quick thought, can you go the the SPECIAL school and meet with > some > of the parents? They maybe the ones who will know where inclusive > practice > is happening in schools. It sort of going in the back door to get to > the > front gate. > > I love the picture in day of a parent with a child with a disability. > Maybe > that could be part of a LOGO??? > Have a great day. GO GIRL > > Kindest thoughts Jane > > Jane Warner/Hudson > > 07 46714737 > > > > > > Sheree, > > Here is a different picture: > > This is a picture of inclusion. > > Inclusion is a moral issue. It is about teaching our children to > care for > one another. > > It is not about peers being forced but peers being allowed to learn > of the > love of your son. > > Inclusion is also a technical issue. June Downing (one of the > keynotes at > AACL) and Tim Loreman (the Aussie for Concordia awarded for > inclusion by > AACL) and I have been communicating since we met up in Canada. June > reported > 25 years of evidence and so was intrigued when I sent her a study > from 1932 > and we have traced this through now 77 years of evidence where none > exists > to support segregation. Tim writes: > > "I think what you are uncovering here is extremely critical to the > debate. I > also sense that inclusion is not the only area in education where > practices > just go along on the strength of tradition etc. with little scientific > evidence to support it (I think about areas like homework which, like > segregation, is a widespread practice with little to support it). I > think > the difference is that with the whole medical model background and > its link > to special education educators might just have assumed that some > remote > medical scientist types have proven the efficacy of segregation, and > then > look no further (what other profession would do that?). I think you > are > quite right - the efficacy has clearly not been proven - not even > close! > It's all smoke & mirrors." > > So why do we it? > > We posit that segregation is a (im)moral habit that has been passed > forward > now for over 3,500 years. It is not about educational science but > human > beliefs. Inclusion is a "post-eugenic thought", an affair of the > heart, that > has existed alongside what we call "the killing thoughts" of > segregation for > all of this time. It is only of recent that we dare promote it as a > dominate > thought. > > We are only beginning to dare to learn the technical aspects of > inclusion > and let me tell you the technical findings aren't so favourable for > the many > human service "fixtures" you find in your drawing. In fact, much > like what > Maureen asserts about human service in adult world - holds true in > children's human service world. Inclusion really only needs adults to > interpret the acts of kindness inherent in children, shape the > sophistications of their natural helping talents and not get in the > way too > much. > > One other thought to leave you with: - there is no such thing as > special > education. It is a code word for segregation. Children do not have > special > needs. They have human needs - to be loved and love, to feel safe and > welcome, to move about their environments and to learn to find their > place > in the world. "Special" are all of those weird and wonderful things > we do > instead of doing this. > > I know these are hard thoughts when one is "in" the specially > constructed > world but I hope liberating from that world is to see that the > "emperor of > special education really has no clothes". > > Kindest thoughts. > > dw > > > -----Original Message----- > From: familyvoices-bounces at inpress.pledgonline.com > [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of > Family > Voices > Sent: Monday, April 06, 2009 9:02 PM > To: familyvoices at inpress.pledgonline.com > Subject: FV: What I learned from Canada and the brick wall I hit > when I > gothome > > Canada was amazing. I suffered a little from information overload > so I > decided to focus on inclusive education as my son is about to go to > secondary school next year. My brain works in pictures, so I have > attached > a picture that shows the model of inclusive education purported at the > conference. The student with the disability is Isaac (my son). > > > > When I came home I read all the research on inclusive education I > could > get > my hands on. Basically what I found is: > > > > . There is no research that says segregated settings for > people > with > disabilities are better. This is because it is difficult to control > variables that allow a comparison. So the policies and processes > surrounding special education in Australia are based on resource > availability and management, not on what is best for children. > > . The research around special education focuses on therapies > and > teaching methods, not on the location of learning. > > . There is an abundance of research around the benefits of > inclusive > education. > > . Inclusive education benefits all - teachers, students with a > disability, peers and parents. > > . The Commonwealth Disability Act includes lots of good > statements > about inclusive education but then it finishes with "A provider can > offer a > defence that adjustments are unreasonable if they produce > unjustifiable > hardship" > > > > In the ACT the process for getting a person with disability into a > school is > > > > 1. Parent meets with school counsellor to voice preferences > > 2. Counsellor does an Assessment of Needs and makes a > recommendation > to > the Department of Education > > 3. The Department of Education assigns the student to a school > > > > I met with the school counsellor and told her I wanted him to go to an > ordinary school, she thought I was crazy and didn't know which schools > did > inclusion well in the ACT. > > > > I have no idea how to find out which schools do inclusion well in the > ACT. > I suspect none. > > > > I haven't worked out how I can change that by the time my son is ready > for > high school in 9 months. > > > > What next? Perhaps I need to move to Canada where Isaac wont be > thought > of > as an unjustifiable hardship. > > > > Sheree Henley > > Senior Business Analyst > What is a business analyst? > berr > a.edu.au/icts/pmo/about/contact-us%23Sheree> > 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 > berr > a.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. > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.0.238 / Virus Database: 270.11.42/2042 - Release Date: > 04/05/09 > 10:54:00 > > > > > > !DSPAM:585,49da8e77283961198567559! > > > > From familyvoices at inpress.pledgonline.com Fri Apr 24 21:33:18 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 25 Apr 2009 14:33:18 +1000 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <00a501c9c554$b21a69d0$164f3d70$@net.au> Message-ID: Hey Jaquie You are right size & familiarity aren?t necessarily a bad thing nor are they the only catalyst for a group reaching a ?tipping point?. I think it depends more on the original intent of the group and whether it has served its purpose or not. For example I assume your ongoing group of 1700+ is a lifelong information sharing avenue that you can opt in and out of being very active or merely a lurker as it suits where you are at in your ?journey?. Some of the groups I have been able to watch have had more specific targets and roles. Our group for parents of people with CP is probably similar to your Angelman community with the exception it has stayed quite local (Aus/NZ) because so many issues around funding/services/equipment tend to need that. Quite a few members also spend time on the International based CP groups and there is subsequent information sharing that way. It would be interesting to see research on the dynamics of groups and how they regulate themselves. I know with the CP group we had one member jack up last year because she had a different opinion to a number of us on the Spastic Centre running a awareness campaign called ?CP Champions?. There was a group of us who felt defining these ?champions? by their diagnosis and not using ?People First Language? was poor form by the Spastic Centre (don?t even ask about their organization name ugh) and were discussing that issue (and slightly ?slamming? TSC). She felt we should move those discussions to another forum because they were essentially political not CP related. She was outvoted by the rest of the members of the group who explained while they weren?t so politically active they still wanted to be privy to these discussions and ideas as it helped them formulate their own thinking, views and opinions. It was a very interesting to watch the mechanics of the group at work. And a end note The Spastic Centre agreed to change their awareness campaign to Celebrating Champions as a result of the high number of complaints and correspondence they received there?s power in these groups. That being said, I also can?t underestimate the information and resource that is a Hairdressing Salon with 30 staff and huge clientele. My mum and sister run such a salon in our local community. There is quite a bit of ?ownership? of Mac by the clients as they have followed his journey (and ours I guess). There is always someone who knows something about someone or something else. We often joke the ?world wide web has got nothin? on a hairdressing salon?. Not to mention what a great ?educational role? it plays as people start to learn why ?their? Mac isn?t going to the special school, why we don?t do mainstream physical therapy etc. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:20 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Gina ? cool article! Online support groups have been my lifeline too ? everything good I have learned about anything, from how to cope, how to deal with eli?s medical needs, disability theory and politics is all from online groups. The only thing which is different in my experience is I have not had the sense that size is bad or that familiarity is detrimental ? I?ve been active in the online Angelman community for 5 years and we have, I think, 1700 members and its an amazing experience. Any hour of the night or day there is another parent online who can help you. Those relationships can be real too ? our trip to Canada and the US 3 years ago to learn about how to transition Eli into an inclusive adult life was designed around meeting and staying with families we had only ever me online. It was awesome....and the genesis of the amazing life Eli has now. As a group, it is interesting how much in common attempts at early intervention are around the world, and also how universally futile....lots of us decide to just quit therapy or to redirect it after hearing the experiences of other parents. Jaquie :-) From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn?t really a point to it more food for thought as I try to understand what has/can change in this area. As always with me not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the ?on-line support group? which has been around in a fairly significant format for the last decade. This takes the old adage ?it takes a village to raise a child? to a whole new level. I know I am often accused by my family a going for ?global domination? (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially ?stalked? him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac?s early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy ? there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, ?alternative treatments for brain injuries?, ?tube feeding groups?, ?organic food groups?, acquired brain injury groups (although I found too much snobbery in the Acq.BI group ? I didn?t realise there were people out there with a sense that if you ?acquire? a brain injury you see yourself as ?superior? to someone born with a brain injury or disability an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don?t often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis ? but you are a cyber group. These types of groups help you maintain your ?real life? relationships because you are seeking out supports specific to your child?s (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily ?because you both have a child with CP?, more because you have found someone you would, had you met in ?real life?, probably have been friends with anyway. On-line groups remove the ?distance barriers? they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the ?fear factor? many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how ?sane? I wouldn?t be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac?s school journey and contribute to a group blog called ?equal not special?. I have recently been reunited with my old original cyber group friends on Facebook ? time has not diminished the camaraderie we feel for one another, although our ?need? for one another has gone. I plan to establish on-line sites to help Mac and others with ?No Voice? where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage ? I think my family is right ? I am going for global domination So are their any risks to online supports? Sure someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back :-) But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the ?real world? ? so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing ? it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) ? they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? ? the family had given them my name as someone who might know what to do:-)) I had my spare pump at home so dropped it round, trained the family etc. Mac?s feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn?t know what to do, Sydney Children?s hosp were not much better when I called them ? their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a ?spare tube? from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac?s new tube to arrive. We have since had to share one of Mac?s spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say ?No? a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn?t it be nice to think that one day, having a disability will be so inconsequential there will not be a ?disability industry? only the tail end of an ?inclusion industry?. Meg, I see your ?long wind-ed-ness? and up you with ?exhorbitently wordyness?. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus _____ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It?s begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina?s, Jill?s and Miriam?s thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you?ve got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. 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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 Fri Apr 24 22:33:41 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 25 Apr 2009 13:33:41 +0800 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: References: <00a501c9c554$b21a69d0$164f3d70$@net.au> Message-ID: <000301c9c567$64a50710$2def1530$@net.au> Thanks Meg, and I think you are right about the purpose of the group ? the angelman group is exactly what you have described. The stuff I have looked at in terms of facilitating online groups suggests that if we do the usual stuff we?d do in a good face to face situation ? eg nominate a skilled facilitator, agree to the topics for discussion beforehand, lay down the ground rules, etc it all works very well. Relationship building is really important too so some off topic discussion to get to know each other ? in Family Voices we have all met so thats different. We?ve had some huge fights on our big list, and sometimes people leave, but then calm down and come back and everyone is welcoming when that happens. I think as a group over time we have learned to moderate our opinions...and to be gentle in expressing them if they may offend. We do have a balese on religion and politics, with a separate group being formed for religion based discussion of disability. I think thats a good thing. Love the hairdressing stuff! Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 12:33 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hey Jaquie You are right size & familiarity aren?t necessarily a bad thing nor are they the only catalyst for a group reaching a ?tipping point?. I think it depends more on the original intent of the group and whether it has served its purpose or not. For example I assume your ongoing group of 1700+ is a lifelong information sharing avenue that you can opt in and out of being very active or merely a lurker as it suits where you are at in your ?journey?. Some of the groups I have been able to watch have had more specific targets and roles. Our group for parents of people with CP is probably similar to your Angelman community with the exception it has stayed quite local (Aus/NZ) because so many issues around funding/services/equipment tend to need that. Quite a few members also spend time on the International based CP groups and there is subsequent information sharing that way. It would be interesting to see research on the dynamics of groups and how they regulate themselves. I know with the CP group we had one member jack up last year because she had a different opinion to a number of us on the Spastic Centre running a awareness campaign called ?CP Champions?. There was a group of us who felt defining these ?champions? by their diagnosis and not using ?People First Language? was poor form by the Spastic Centre (don?t even ask about their organization name ugh) and were discussing that issue (and slightly ?slamming? TSC). She felt we should move those discussions to another forum because they were essentially political not CP related. She was outvoted by the rest of the members of the group who explained while they weren?t so politically active they still wanted to be privy to these discussions and ideas as it helped them formulate their own thinking, views and opinions. It was a very interesting to watch the mechanics of the group at work. And a end note The Spastic Centre agreed to change their awareness campaign to Celebrating Champions as a result of the high number of complaints and correspondence they received there?s power in these groups. That being said, I also can?t underestimate the information and resource that is a Hairdressing Salon with 30 staff and huge clientele. My mum and sister run such a salon in our local community. There is quite a bit of ?ownership? of Mac by the clients as they have followed his journey (and ours I guess). There is always someone who knows something about someone or something else. We often joke the ?world wide web has got nothin? on a hairdressing salon?. Not to mention what a great ?educational role? it plays as people start to learn why ?their? Mac isn?t going to the special school, why we don?t do mainstream physical therapy etc. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:20 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Gina ? cool article! Online support groups have been my lifeline too ? everything good I have learned about anything, from how to cope, how to deal with eli?s medical needs, disability theory and politics is all from online groups. The only thing which is different in my experience is I have not had the sense that size is bad or that familiarity is detrimental ? I?ve been active in the online Angelman community for 5 years and we have, I think, 1700 members and its an amazing experience. Any hour of the night or day there is another parent online who can help you. Those relationships can be real too ? our trip to Canada and the US 3 years ago to learn about how to transition Eli into an inclusive adult life was designed around meeting and staying with families we had only ever me online. It was awesome....and the genesis of the amazing life Eli has now. As a group, it is interesting how much in common attempts at early intervention are around the world, and also how universally futile....lots of us decide to just quit therapy or to redirect it after hearing the experiences of other parents. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn?t really a point to it more food for thought as I try to understand what has/can change in this area. As always with me not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the ?on-line support group? which has been around in a fairly significant format for the last decade. This takes the old adage ?it takes a village to raise a child? to a whole new level. I know I am often accused by my family a going for ?global domination? (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially ?stalked? him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac?s early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy ? there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, ?alternative treatments for brain injuries?, ?tube feeding groups?, ?organic food groups?, acquired brain injury groups (although I found too much snobbery in the Acq.BI group ? I didn?t realise there were people out there with a sense that if you ?acquire? a brain injury you see yourself as ?superior? to someone born with a brain injury or disability an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don?t often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis ? but you are a cyber group. These types of groups help you maintain your ?real life? relationships because you are seeking out supports specific to your child?s (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily ?because you both have a child with CP?, more because you have found someone you would, had you met in ?real life?, probably have been friends with anyway. On-line groups remove the ?distance barriers? they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the ?fear factor? many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how ?sane? I wouldn?t be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac?s school journey and contribute to a group blog called ?equal not special?. I have recently been reunited with my old original cyber group friends on Facebook ? time has not diminished the camaraderie we feel for one another, although our ?need? for one another has gone. I plan to establish on-line sites to help Mac and others with ?No Voice? where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage ? I think my family is right ? I am going for global domination So are their any risks to online supports? Sure someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back J But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the ?real world? ? so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing ? it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) ? they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? ? the family had given them my name as someone who might know what to doJ) I had my spare pump at home so dropped it round, trained the family etc. Mac?s feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn?t know what to do, Sydney Children?s hosp were not much better when I called them ? their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a ?spare tube? from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac?s new tube to arrive. We have since had to share one of Mac?s spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say ?No? a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn?t it be nice to think that one day, having a disability will be so inconsequential there will not be a ?disability industry? only the tail end of an ?inclusion industry?. Meg, I see your ?long wind-ed-ness? and up you with ?exhorbitently wordyness?. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus _____ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It?s begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina?s, Jill?s and Miriam?s thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you?ve got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. 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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 Fri Apr 24 23:46:54 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 25 Apr 2009 14:46:54 +0800 Subject: FV: Early Intervention from Meg Sweeney In-Reply-To: <000301c9c567$64a50710$2def1530$@net.au> References: <00a501c9c554$b21a69d0$164f3d70$@net.au> <000301c9c567$64a50710$2def1530$@net.au> Message-ID: <001701c9c571$9f2aac00$dd800400$@com> On a light note.. I see now where my connections came from! My mother was a hairdresser. I grew up in the back of a ?beauty shop?. Love the opportunity to think of her around these issues. Thank you, Gina. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Meg, and I think you are right about the purpose of the group ? the angelman group is exactly what you have described. The stuff I have looked at in terms of facilitating online groups suggests that if we do the usual stuff we?d do in a good face to face situation ? eg nominate a skilled facilitator, agree to the topics for discussion beforehand, lay down the ground rules, etc it all works very well. Relationship building is really important too so some off topic discussion to get to know each other ? in Family Voices we have all met so thats different. We?ve had some huge fights on our big list, and sometimes people leave, but then calm down and come back and everyone is welcoming when that happens. I think as a group over time we have learned to moderate our opinions...and to be gentle in expressing them if they may offend. We do have a balese on religion and politics, with a separate group being formed for religion based discussion of disability. I think thats a good thing. Love the hairdressing stuff! Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 12:33 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hey Jaquie You are right size & familiarity aren?t necessarily a bad thing nor are they the only catalyst for a group reaching a ?tipping point?. I think it depends more on the original intent of the group and whether it has served its purpose or not. For example I assume your ongoing group of 1700+ is a lifelong information sharing avenue that you can opt in and out of being very active or merely a lurker as it suits where you are at in your ?journey?. Some of the groups I have been able to watch have had more specific targets and roles. Our group for parents of people with CP is probably similar to your Angelman community with the exception it has stayed quite local (Aus/NZ) because so many issues around funding/services/equipment tend to need that. Quite a few members also spend time on the International based CP groups and there is subsequent information sharing that way. It would be interesting to see research on the dynamics of groups and how they regulate themselves. I know with the CP group we had one member jack up last year because she had a different opinion to a number of us on the Spastic Centre running a awareness campaign called ?CP Champions?. There was a group of us who felt defining these ?champions? by their diagnosis and not using ?People First Language? was poor form by the Spastic Centre (don?t even ask about their organization name ugh) and were discussing that issue (and slightly ?slamming? TSC). She felt we should move those discussions to another forum because they were essentially political not CP related. She was outvoted by the rest of the members of the group who explained while they weren?t so politically active they still wanted to be privy to these discussions and ideas as it helped them formulate their own thinking, views and opinions. It was a very interesting to watch the mechanics of the group at work. And a end note The Spastic Centre agreed to change their awareness campaign to Celebrating Champions as a result of the high number of complaints and correspondence they received there?s power in these groups. That being said, I also can?t underestimate the information and resource that is a Hairdressing Salon with 30 staff and huge clientele. My mum and sister run such a salon in our local community. There is quite a bit of ?ownership? of Mac by the clients as they have followed his journey (and ours I guess). There is always someone who knows something about someone or something else. We often joke the ?world wide web has got nothin? on a hairdressing salon?. Not to mention what a great ?educational role? it plays as people start to learn why ?their? Mac isn?t going to the special school, why we don?t do mainstream physical therapy etc. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:20 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Gina ? cool article! Online support groups have been my lifeline too ? everything good I have learned about anything, from how to cope, how to deal with eli?s medical needs, disability theory and politics is all from online groups. The only thing which is different in my experience is I have not had the sense that size is bad or that familiarity is detrimental ? I?ve been active in the online Angelman community for 5 years and we have, I think, 1700 members and its an amazing experience. Any hour of the night or day there is another parent online who can help you. Those relationships can be real too ? our trip to Canada and the US 3 years ago to learn about how to transition Eli into an inclusive adult life was designed around meeting and staying with families we had only ever me online. It was awesome....and the genesis of the amazing life Eli has now. As a group, it is interesting how much in common attempts at early intervention are around the world, and also how universally futile....lots of us decide to just quit therapy or to redirect it after hearing the experiences of other parents. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn?t really a point to it more food for thought as I try to understand what has/can change in this area. As always with me not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the ?on-line support group? which has been around in a fairly significant format for the last decade. This takes the old adage ?it takes a village to raise a child? to a whole new level. I know I am often accused by my family a going for ?global domination? (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially ?stalked? him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac?s early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy ? there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, ?alternative treatments for brain injuries?, ?tube feeding groups?, ?organic food groups?, acquired brain injury groups (although I found too much snobbery in the Acq.BI group ? I didn?t realise there were people out there with a sense that if you ?acquire? a brain injury you see yourself as ?superior? to someone born with a brain injury or disability an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don?t often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis ? but you are a cyber group. These types of groups help you maintain your ?real life? relationships because you are seeking out supports specific to your child?s (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily ?because you both have a child with CP?, more because you have found someone you would, had you met in ?real life?, probably have been friends with anyway. On-line groups remove the ?distance barriers? they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the ?fear factor? many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how ?sane? I wouldn?t be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac?s school journey and contribute to a group blog called ?equal not special?. I have recently been reunited with my old original cyber group friends on Facebook ? time has not diminished the camaraderie we feel for one another, although our ?need? for one another has gone. I plan to establish on-line sites to help Mac and others with ?No Voice? where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage ? I think my family is right ? I am going for global domination So are their any risks to online supports? Sure someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back J But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the ?real world? ? so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing ? it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) ? they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? ? the family had given them my name as someone who might know what to doJ) I had my spare pump at home so dropped it round, trained the family etc. Mac?s feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn?t know what to do, Sydney Children?s hosp were not much better when I called them ? their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a ?spare tube? from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac?s new tube to arrive. We have since had to share one of Mac?s spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say ?No? a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn?t it be nice to think that one day, having a disability will be so inconsequential there will not be a ?disability industry? only the tail end of an ?inclusion industry?. Meg, I see your ?long wind-ed-ness? and up you with ?exhorbitently wordyness?. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus _____ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It?s begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina?s, Jill?s and Miriam?s thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you?ve got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. 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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 Sat Apr 25 03:30:30 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 25 Apr 2009 18:30:30 +0800 Subject: FV: online groups In-Reply-To: <000301c9c567$64a50710$2def1530$@net.au> References: <00a501c9c554$b21a69d0$164f3d70$@net.au> <000301c9c567$64a50710$2def1530$@net.au> Message-ID: <000001c9c590$dbba9350$932fb9f0$@net.au> And I?m sorry I addressed that post you Meg, when I meant Gina ? it was the subject line! Another online group etiquette thing I often miss is change the subject line as the subject changes...dang... Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Meg, and I think you are right about the purpose of the group ? the angelman group is exactly what you have described. The stuff I have looked at in terms of facilitating online groups suggests that if we do the usual stuff we?d do in a good face to face situation ? eg nominate a skilled facilitator, agree to the topics for discussion beforehand, lay down the ground rules, etc it all works very well. Relationship building is really important too so some off topic discussion to get to know each other ? in Family Voices we have all met so thats different. We?ve had some huge fights on our big list, and sometimes people leave, but then calm down and come back and everyone is welcoming when that happens. I think as a group over time we have learned to moderate our opinions...and to be gentle in expressing them if they may offend. We do have a balese on religion and politics, with a separate group being formed for religion based discussion of disability. I think thats a good thing. Love the hairdressing stuff! Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 12:33 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hey Jaquie You are right size & familiarity aren?t necessarily a bad thing nor are they the only catalyst for a group reaching a ?tipping point?. I think it depends more on the original intent of the group and whether it has served its purpose or not. For example I assume your ongoing group of 1700+ is a lifelong information sharing avenue that you can opt in and out of being very active or merely a lurker as it suits where you are at in your ?journey?. Some of the groups I have been able to watch have had more specific targets and roles. Our group for parents of people with CP is probably similar to your Angelman community with the exception it has stayed quite local (Aus/NZ) because so many issues around funding/services/equipment tend to need that. Quite a few members also spend time on the International based CP groups and there is subsequent information sharing that way. It would be interesting to see research on the dynamics of groups and how they regulate themselves. I know with the CP group we had one member jack up last year because she had a different opinion to a number of us on the Spastic Centre running a awareness campaign called ?CP Champions?. There was a group of us who felt defining these ?champions? by their diagnosis and not using ?People First Language? was poor form by the Spastic Centre (don?t even ask about their organization name ugh) and were discussing that issue (and slightly ?slamming? TSC). She felt we should move those discussions to another forum because they were essentially political not CP related. She was outvoted by the rest of the members of the group who explained while they weren?t so politically active they still wanted to be privy to these discussions and ideas as it helped them formulate their own thinking, views and opinions. It was a very interesting to watch the mechanics of the group at work. And a end note The Spastic Centre agreed to change their awareness campaign to Celebrating Champions as a result of the high number of complaints and correspondence they received there?s power in these groups. That being said, I also can?t underestimate the information and resource that is a Hairdressing Salon with 30 staff and huge clientele. My mum and sister run such a salon in our local community. There is quite a bit of ?ownership? of Mac by the clients as they have followed his journey (and ours I guess). There is always someone who knows something about someone or something else. We often joke the ?world wide web has got nothin? on a hairdressing salon?. Not to mention what a great ?educational role? it plays as people start to learn why ?their? Mac isn?t going to the special school, why we don?t do mainstream physical therapy etc. Cheers Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:20 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Gina ? cool article! Online support groups have been my lifeline too ? everything good I have learned about anything, from how to cope, how to deal with eli?s medical needs, disability theory and politics is all from online groups. The only thing which is different in my experience is I have not had the sense that size is bad or that familiarity is detrimental ? I?ve been active in the online Angelman community for 5 years and we have, I think, 1700 members and its an amazing experience. Any hour of the night or day there is another parent online who can help you. Those relationships can be real too ? our trip to Canada and the US 3 years ago to learn about how to transition Eli into an inclusive adult life was designed around meeting and staying with families we had only ever me online. It was awesome....and the genesis of the amazing life Eli has now. As a group, it is interesting how much in common attempts at early intervention are around the world, and also how universally futile....lots of us decide to just quit therapy or to redirect it after hearing the experiences of other parents. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn?t really a point to it more food for thought as I try to understand what has/can change in this area. As always with me not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the ?on-line support group? which has been around in a fairly significant format for the last decade. This takes the old adage ?it takes a village to raise a child? to a whole new level. I know I am often accused by my family a going for ?global domination? (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially ?stalked? him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac?s early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy ? there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, ?alternative treatments for brain injuries?, ?tube feeding groups?, ?organic food groups?, acquired brain injury groups (although I found too much snobbery in the Acq.BI group ? I didn?t realise there were people out there with a sense that if you ?acquire? a brain injury you see yourself as ?superior? to someone born with a brain injury or disability an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don?t often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis ? but you are a cyber group. These types of groups help you maintain your ?real life? relationships because you are seeking out supports specific to your child?s (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily ?because you both have a child with CP?, more because you have found someone you would, had you met in ?real life?, probably have been friends with anyway. On-line groups remove the ?distance barriers? they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the ?fear factor? many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how ?sane? I wouldn?t be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac?s school journey and contribute to a group blog called ?equal not special?. I have recently been reunited with my old original cyber group friends on Facebook ? time has not diminished the camaraderie we feel for one another, although our ?need? for one another has gone. I plan to establish on-line sites to help Mac and others with ?No Voice? where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage ? I think my family is right ? I am going for global domination So are their any risks to online supports? Sure someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back J But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the ?real world? ? so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing ? it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) ? they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? ? the family had given them my name as someone who might know what to doJ) I had my spare pump at home so dropped it round, trained the family etc. Mac?s feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn?t know what to do, Sydney Children?s hosp were not much better when I called them ? their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a ?spare tube? from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac?s new tube to arrive. We have since had to share one of Mac?s spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say ?No? a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn?t it be nice to think that one day, having a disability will be so inconsequential there will not be a ?disability industry? only the tail end of an ?inclusion industry?. Meg, I see your ?long wind-ed-ness? and up you with ?exhorbitently wordyness?. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus _____ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It?s begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina?s, Jill?s and Miriam?s thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you?ve got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he ?just knows stuff?. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac?s classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park ? his reason for choosing that party venue because he thinks Mac will like the animals amazing, wonderful, beautiful. Gina _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who?s going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, ?specialist early intervention? which sounds ?oh so high tech and scientific? - isn?t. No surprise to you but incredibly surprising to those who claim to be evidence-based ?professionals?. A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O?Sullivan, we also examined ?early intervention? on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of ?early intervention and educational? practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs _____ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won?t write much here as your words cover so much and I couldn?t really add anything of value to it. But I thought I?d share Michael Kendrick?s short article on the Natural Authority of Families. 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: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I?m sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill?s thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn?s long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn?t do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn?s teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven?t reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child?s interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying ?why are you here, I?m sure you would get better help at the early intervention centre? my reply was ?one new graduate knows as much as another new graduate and I trust in your ability? The whole atmosphere at community health was different. I can?t really articulate what the ??T? factor was but in hindsight I?m sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn?t a life defining place in the family?s life, just another appointment in the week. Absent was the subtle ?membership of the disabled family? stuff. Joscelyn?s development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It?s not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us we are the Sweeney?s a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don?t get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind .I agree Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family?s lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone?s life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience .its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I?m sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ..I guess you all know that I?m long winded ! Kindest regards Meg Sweeney P.S I?m not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it?s in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam _____ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention ?Early intervention? has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and ?brokenness? and even more sadly that the world has developed a set of historical ?habits? that includes segregation and congregation that they have passed down through the generations- not because they are ?good? or not because they ?work?, but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one?s pathways in life but a ?hurried program? of therapy? and ?getting ready? (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn?t matter. It is ?the way we?ve always done it?, so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being ?different?. Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty ? under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn?t. But that is what we are ?sold?. Miriam is so wise. We need to avail ourselves but not force our views. If we are ?chosen? as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the ?gap? not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family?s present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message _____ _____ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract ? my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don?t tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah ? and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina _____ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year?s State Conference Strengthening Connections ? Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. _____ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com _____ Get the new Windows Live Messenger. 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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 Sat Apr 25 04:52:26 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 25 Apr 2009 21:22:26 +0930 Subject: FV: Early Intervention from Meg Sweeney References: <00a501c9c554$b21a69d0$164f3d70$@net.au> <000301c9c567$64a50710$2def1530$@net.au> <001701c9c571$9f2aac00$dd800400$@com> Message-ID: Another note on groups When Ben was about a year old, and there were no ''groups' at all, another Mum and I 'advertised' over talk back radio for other mums who had a baby with Down syndrome to join a chat/support group. We had our first get together 3 weeks later with 12 mums. My mother in law and her friends provided a creche for the babies. The main reason for meeting was to support each other with what ever, as most of us were also first time mums. We also had lots of fun times involving dads, siblings, grandparents etc. Several of the children went on to mainstream schooling with varying degrees of success, but I believe it was the beginning of the inclusion journey for children with Down syndrome in SA.. Some others of the group later formed the Down syndome society of SA. When they all went off to school we got busy with our own worlds and stopped meeting. Now 30 + years later some of us have 'regrouped'. We have amazing conversations about the paths we have taken, some similar and some very different, and the trials and tribulations along the way, but we all have the same current concerns - the long term future and security of our sons and daughters e.g. accommodation, independent living, health, employment, life after we parents are not around etc. It's truly amazing how we have reconnected, almost from where we left off. ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Saturday, April 25, 2009 4:16 PM Subject: Re: FV: Early Intervention from Meg Sweeney On a light note.. I see now where my connections came from! My mother was a hairdresser. I grew up in the back of a "beauty shop". Love the opportunity to think of her around these issues. Thank you, Gina. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Meg, and I think you are right about the purpose of the group - the angelman group is exactly what you have described. The stuff I have looked at in terms of facilitating online groups suggests that if we do the usual stuff we'd do in a good face to face situation - eg nominate a skilled facilitator, agree to the topics for discussion beforehand, lay down the ground rules, etc it all works very well. Relationship building is really important too so some off topic discussion to get to know each other - in Family Voices we have all met so thats different. We've had some huge fights on our big list, and sometimes people leave, but then calm down and come back and everyone is welcoming when that happens. I think as a group over time we have learned to moderate our opinions...and to be gentle in expressing them if they may offend. We do have a balese on religion and politics, with a separate group being formed for religion based discussion of disability. I think thats a good thing. Love the hairdressing stuff! Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 12:33 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hey Jaquie You are right size & familiarity aren't necessarily a bad thing nor are they the only catalyst for a group reaching a 'tipping point'. I think it depends more on the original intent of the group and whether it has served its purpose or not. For example I assume your ongoing group of 1700+ is a lifelong information sharing avenue that you can opt in and out of being very active or merely a lurker as it suits where you are at in your "journey". Some of the groups I have been able to watch have had more specific targets and roles. Our group for parents of people with CP is probably similar to your Angelman community with the exception it has stayed quite local (Aus/NZ) because so many issues around funding/services/equipment tend to need that. Quite a few members also spend time on the International based CP groups and there is subsequent information sharing that way. It would be interesting to see research on the dynamics of groups and how they regulate themselves. I know with the CP group we had one member jack up last year because she had a different opinion to a number of us on the Spastic Centre running a awareness campaign called "CP Champions". There was a group of us who felt defining these 'champions' by their diagnosis and not using "People First Language" was poor form by the Spastic Centre (don't even ask about their organization name. ugh) and were discussing that issue (and slightly 'slamming' TSC). She felt we should move those discussions to another forum because they were essentially political not CP related. She was outvoted by the rest of the members of the group who explained while they weren't so politically active they still wanted to be privy to these discussions and ideas as it helped them formulate their own thinking, views and opinions. It was a very interesting to watch the mechanics of the group at work. And a end note. The Spastic Centre agreed to change their awareness campaign to Celebrating Champions as a result of the high number of complaints and correspondence they received. there's power in these groups. That being said, I also can't underestimate the information and resource that is a Hairdressing Salon with 30 staff and huge clientele. My mum and sister run such a salon in our local community. There is quite a bit of 'ownership' of Mac by the clients as they have followed his journey (and ours I guess). There is always someone who knows something about someone or something else. We often joke the 'world wide web has got nothin' on a hairdressing salon". Not to mention what a great 'educational role' it plays as people start to learn why "their" Mac isn't going to the special school, why we don't do mainstream physical therapy etc. Cheers Gina ------------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:20 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Gina - cool article! Online support groups have been my lifeline too - everything good I have learned about anything, from how to cope, how to deal with eli's medical needs, disability theory and politics is all from online groups. The only thing which is different in my experience is I have not had the sense that size is bad or that familiarity is detrimental - I've been active in the online Angelman community for 5 years and we have, I think, 1700 members and its an amazing experience. Any hour of the night or day there is another parent online who can help you. Those relationships can be real too - our trip to Canada and the US 3 years ago to learn about how to transition Eli into an inclusive adult life was designed around meeting and staying with families we had only ever me online. It was awesome....and the genesis of the amazing life Eli has now. As a group, it is interesting how much in common attempts at early intervention are around the world, and also how universally futile....lots of us decide to just quit therapy or to redirect it after hearing the experiences of other parents. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn't really a point to it more food for thought as I try to understand what has/can change in this area. As always with me. not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the 'on-line support group' which has been around in a fairly significant format for the last decade. This takes the old adage "it takes a village to raise a child" to a whole new level. I know I am often accused by my family a going for "global domination" (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially 'stalked' him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac's early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy - there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, 'alternative treatments for brain injuries', 'tube feeding groups', 'organic food groups', acquired brain injury groups (although I found too much snobbery in the Acq.BI group - I didn't realise there were people out there with a sense that if you "acquire" a brain injury you see yourself as 'superior' to someone born with a brain injury or disability. an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don't often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis - but you are a cyber group. These types of groups help you maintain your "real life" relationships because you are seeking out supports specific to your child's (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily "because you both have a child with CP", more because you have found someone you would, had you met in 'real life', probably have been friends with anyway. On-line groups remove the 'distance barriers' they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the 'fear factor' many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how "sane" I wouldn't be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac's school journey and contribute to a group blog called "equal not special". I have recently been reunited with my old original cyber group friends on Facebook - time has not diminished the camaraderie we feel for one another, although our "need" for one another has gone. I plan to establish on-line sites to help Mac and others with 'No Voice" where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage - I think my family is right - I am going for global domination. So are their any risks to online supports? Sure. someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back J But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the "real world" - so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing - it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) - they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? - the family had given them my name as someone who might know what to doJ) I had my spare pump at home so dropped it round, trained the family etc. Mac's feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn't know what to do, Sydney Children's hosp were not much better when I called them - their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a 'spare tube' from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac's new tube to arrive. We have since had to share one of Mac's spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends. say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say 'No' a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn't it be nice to think that one day, having a disability will be so inconsequential there will not be a 'disability industry' only the tail end of an 'inclusion industry'. Meg, I see your 'long wind-ed-ness' and up you with 'exhorbitently wordyness'. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus ------------------------------------------------------------------------------ From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It's begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina's, Jill's and Miriam's thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you've got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he 'just knows stuff'. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac's classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park - his reason for choosing that party venue. because he thinks Mac will like the animals. amazing, wonderful, beautiful. Gina ------------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who's going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, "specialist early intervention" which sounds "oh so high tech and scientific" - isn't. No surprise to you but incredibly surprising to those who claim to be evidence-based "professionals". A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O'Sullivan, we also examined "early intervention" on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of "early intervention and educational" practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career..not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ---------------------------------------------------------------------------- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ---------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us.we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind..I agree..Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience..its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ...I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ---------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ---------------------------------------------------------------------------- ---------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ---------------------------------------------------------------------------- From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ---------------------------------------------------------------------------- I am using the Free version of SPAMfighter. We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ---------------------------------------------------------------------------- Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ---------------------------------------------------------------------------- Get the new Windows Live Messenger. 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Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sat Apr 25 05:06:29 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sat, 25 Apr 2009 21:36:29 +0930 Subject: FV: Early Intervention from Meg Sweeney References: <00a501c9c554$b21a69d0$164f3d70$@net.au> <000301c9c567$64a50710$2def1530$@net.au><001701c9c571$9f2aac00$dd800400$@com> Message-ID: <6BA15E3A6EC6407FB0E138D372A5BB23@jw> Just learnt not to do this emailing when too tired! Was just having a bit of an online think and meant to press 'save' and not 'send' so you got it without editing and finishing, including name - hope it makes sense in this form! Cheers all Jill ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Saturday, April 25, 2009 9:22 PM Subject: Re: FV: Early Intervention from Meg Sweeney Another note on groups When Ben was about a year old, and there were no ''groups' at all, another Mum and I 'advertised' over talk back radio for other mums who had a baby with Down syndrome to join a chat/support group. We had our first get together 3 weeks later with 12 mums. My mother in law and her friends provided a creche for the babies. The main reason for meeting was to support each other with what ever, as most of us were also first time mums. We also had lots of fun times involving dads, siblings, grandparents etc. Several of the children went on to mainstream schooling with varying degrees of success, but I believe it was the beginning of the inclusion journey for children with Down syndrome in SA.. Some others of the group later formed the Down syndome society of SA. When they all went off to school we got busy with our own worlds and stopped meeting. Now 30 + years later some of us have 'regrouped'. We have amazing conversations about the paths we have taken, some similar and some very different, and the trials and tribulations along the way, but we all have the same current concerns - the long term future and security of our sons and daughters e.g. accommodation, independent living, health, employment, life after we parents are not around etc. It's truly amazing how we have reconnected, almost from where we left off. ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Saturday, April 25, 2009 4:16 PM Subject: Re: FV: Early Intervention from Meg Sweeney On a light note.. I see now where my connections came from! My mother was a hairdresser. I grew up in the back of a "beauty shop". Love the opportunity to think of her around these issues. Thank you, Gina. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Meg, and I think you are right about the purpose of the group - the angelman group is exactly what you have described. The stuff I have looked at in terms of facilitating online groups suggests that if we do the usual stuff we'd do in a good face to face situation - eg nominate a skilled facilitator, agree to the topics for discussion beforehand, lay down the ground rules, etc it all works very well. Relationship building is really important too so some off topic discussion to get to know each other - in Family Voices we have all met so thats different. We've had some huge fights on our big list, and sometimes people leave, but then calm down and come back and everyone is welcoming when that happens. I think as a group over time we have learned to moderate our opinions...and to be gentle in expressing them if they may offend. We do have a balese on religion and politics, with a separate group being formed for religion based discussion of disability. I think thats a good thing. Love the hairdressing stuff! Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 12:33 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hey Jaquie You are right size & familiarity aren't necessarily a bad thing nor are they the only catalyst for a group reaching a 'tipping point'. I think it depends more on the original intent of the group and whether it has served its purpose or not. For example I assume your ongoing group of 1700+ is a lifelong information sharing avenue that you can opt in and out of being very active or merely a lurker as it suits where you are at in your "journey". Some of the groups I have been able to watch have had more specific targets and roles. Our group for parents of people with CP is probably similar to your Angelman community with the exception it has stayed quite local (Aus/NZ) because so many issues around funding/services/equipment tend to need that. Quite a few members also spend time on the International based CP groups and there is subsequent information sharing that way. It would be interesting to see research on the dynamics of groups and how they regulate themselves. I know with the CP group we had one member jack up last year because she had a different opinion to a number of us on the Spastic Centre running a awareness campaign called "CP Champions". There was a group of us who felt defining these 'champions' by their diagnosis and not using "People First Language" was poor form by the Spastic Centre (don't even ask about their organization name. ugh) and were discussing that issue (and slightly 'slamming' TSC). She felt we should move those discussions to another forum because they were essentially political not CP related. She was outvoted by the rest of the members of the group who explained while they weren't so politically active they still wanted to be privy to these discussions and ideas as it helped them formulate their own thinking, views and opinions. It was a very interesting to watch the mechanics of the group at work. And a end note. The Spastic Centre agreed to change their awareness campaign to Celebrating Champions as a result of the high number of complaints and correspondence they received. there's power in these groups. That being said, I also can't underestimate the information and resource that is a Hairdressing Salon with 30 staff and huge clientele. My mum and sister run such a salon in our local community. There is quite a bit of 'ownership' of Mac by the clients as they have followed his journey (and ours I guess). There is always someone who knows something about someone or something else. We often joke the 'world wide web has got nothin' on a hairdressing salon". Not to mention what a great 'educational role' it plays as people start to learn why "their" Mac isn't going to the special school, why we don't do mainstream physical therapy etc. Cheers Gina ---------------------------------------------------------------------------- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:20 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Gina - cool article! Online support groups have been my lifeline too - everything good I have learned about anything, from how to cope, how to deal with eli's medical needs, disability theory and politics is all from online groups. The only thing which is different in my experience is I have not had the sense that size is bad or that familiarity is detrimental - I've been active in the online Angelman community for 5 years and we have, I think, 1700 members and its an amazing experience. Any hour of the night or day there is another parent online who can help you. Those relationships can be real too - our trip to Canada and the US 3 years ago to learn about how to transition Eli into an inclusive adult life was designed around meeting and staying with families we had only ever me online. It was awesome....and the genesis of the amazing life Eli has now. As a group, it is interesting how much in common attempts at early intervention are around the world, and also how universally futile....lots of us decide to just quit therapy or to redirect it after hearing the experiences of other parents. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn't really a point to it more food for thought as I try to understand what has/can change in this area. As always with me. not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the 'on-line support group' which has been around in a fairly significant format for the last decade. This takes the old adage "it takes a village to raise a child" to a whole new level. I know I am often accused by my family a going for "global domination" (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially 'stalked' him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac's early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy - there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, 'alternative treatments for brain injuries', 'tube feeding groups', 'organic food groups', acquired brain injury groups (although I found too much snobbery in the Acq.BI group - I didn't realise there were people out there with a sense that if you "acquire" a brain injury you see yourself as 'superior' to someone born with a brain injury or disability. an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don't often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis - but you are a cyber group. These types of groups help you maintain your "real life" relationships because you are seeking out supports specific to your child's (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily "because you both have a child with CP", more because you have found someone you would, had you met in 'real life', probably have been friends with anyway. On-line groups remove the 'distance barriers' they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the 'fear factor' many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how "sane" I wouldn't be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac's school journey and contribute to a group blog called "equal not special". I have recently been reunited with my old original cyber group friends on Facebook - time has not diminished the camaraderie we feel for one another, although our "need" for one another has gone. I plan to establish on-line sites to help Mac and others with 'No Voice" where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage - I think my family is right - I am going for global domination. So are their any risks to online supports? Sure. someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back J But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the "real world" - so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing - it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) - they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? - the family had given them my name as someone who might know what to doJ) I had my spare pump at home so dropped it round, trained the family etc. Mac's feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn't know what to do, Sydney Children's hosp were not much better when I called them - their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a 'spare tube' from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac's new tube to arrive. We have since had to share one of Mac's spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends. say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say 'No' a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn't it be nice to think that one day, having a disability will be so inconsequential there will not be a 'disability industry' only the tail end of an 'inclusion industry'. Meg, I see your 'long wind-ed-ness' and up you with 'exhorbitently wordyness'. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus ---------------------------------------------------------------------------- From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It's begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina's, Jill's and Miriam's thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you've got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he 'just knows stuff'. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac's classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park - his reason for choosing that party venue. because he thinks Mac will like the animals. amazing, wonderful, beautiful. Gina ---------------------------------------------------------------------------- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who's going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, "specialist early intervention" which sounds "oh so high tech and scientific" - isn't. No surprise to you but incredibly surprising to those who claim to be evidence-based "professionals". A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O'Sullivan, we also examined "early intervention" on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of "early intervention and educational" practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career..not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs -------------------------------------------------------------------------- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam -------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us.we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind..I agree..Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience..its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ...I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam -------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message -------------------------------------------------------------------------- -------------------------------------------------------------------------- To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina -------------------------------------------------------------------------- From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. 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Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sun Apr 26 01:21:17 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Sun, 26 Apr 2009 16:21:17 +0800 Subject: FV: Early Intervention from Meg Sweeney References: <00a501c9c554$b21a69d0$164f3d70$@net.au> <000301c9c567$64a50710$2def1530$@net.au><001701c9c571$9f2aac00$dd800400$@com> <6BA15E3A6EC6407FB0E138D372A5BB23@jw> Message-ID: Hi It's Janette from Esperance. Even though I wasn' able to make it to Canada but would have dearly loved to, we (the Esperance gals) did get to Nashville to meet Bruce and Co in November last year and its so wonderful to listen and read all this communication on inclusion. Its wonderful to hear other parents with the same ideas and dreams for their children. Of course Esperance is a very small isolated town on the south coast of WA and there wasn't a "group" for parents with children with disabilities or difficulties in our town. There wasn't even the thought of "one for Down's" or one for "cerebral palsy" as there would have been only one or two parents in each "group". Instead we decided to become a group who supports all parents regardless of their disability or rather their ability, in other words, children who simply need assistance. Does it matter that some of these children do not have a 'label'? Of course not. If we are talking about inclusion then this means everyone and I am proud and glad to say that no one has to have any label to join our group. We are PLEDG (parents learning and educational development group) and anyone is welcome to join because we believe that everyone learns the same way, whether they have autism, CP or no label at all. In fact some of us have children who simply have fallen behind their peers at school and no amount of help from the school or otherwise has helped them bridge this gap. So we learn how to teach our own children at home, just like all of you, so they can be at their peer level and be a part of their community and school. Our group like so many others has helped us stay "sane" and has been a life line for all of us at so many times in our lives. As you said Jill we all want the same for our children and it is so wonderful to listen to parents who have walked the inclusion road. thank you Janette ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Saturday, April 25, 2009 8:06 PM Subject: Re: FV: Early Intervention from Meg Sweeney Just learnt not to do this emailing when too tired! Was just having a bit of an online think and meant to press 'save' and not 'send' so you got it without editing and finishing, including name - hope it makes sense in this form! Cheers all Jill ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Saturday, April 25, 2009 9:22 PM Subject: Re: FV: Early Intervention from Meg Sweeney Another note on groups When Ben was about a year old, and there were no ''groups' at all, another Mum and I 'advertised' over talk back radio for other mums who had a baby with Down syndrome to join a chat/support group. We had our first get together 3 weeks later with 12 mums. My mother in law and her friends provided a creche for the babies. The main reason for meeting was to support each other with what ever, as most of us were also first time mums. We also had lots of fun times involving dads, siblings, grandparents etc. Several of the children went on to mainstream schooling with varying degrees of success, but I believe it was the beginning of the inclusion journey for children with Down syndrome in SA.. Some others of the group later formed the Down syndome society of SA. When they all went off to school we got busy with our own worlds and stopped meeting. Now 30 + years later some of us have 'regrouped'. We have amazing conversations about the paths we have taken, some similar and some very different, and the trials and tribulations along the way, but we all have the same current concerns - the long term future and security of our sons and daughters e.g. accommodation, independent living, health, employment, life after we parents are not around etc. It's truly amazing how we have reconnected, almost from where we left off. ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Saturday, April 25, 2009 4:16 PM Subject: Re: FV: Early Intervention from Meg Sweeney On a light note.. I see now where my connections came from! My mother was a hairdresser. I grew up in the back of a "beauty shop". Love the opportunity to think of her around these issues. Thank you, Gina. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Meg, and I think you are right about the purpose of the group - the angelman group is exactly what you have described. The stuff I have looked at in terms of facilitating online groups suggests that if we do the usual stuff we'd do in a good face to face situation - eg nominate a skilled facilitator, agree to the topics for discussion beforehand, lay down the ground rules, etc it all works very well. Relationship building is really important too so some off topic discussion to get to know each other - in Family Voices we have all met so thats different. We've had some huge fights on our big list, and sometimes people leave, but then calm down and come back and everyone is welcoming when that happens. I think as a group over time we have learned to moderate our opinions...and to be gentle in expressing them if they may offend. We do have a balese on religion and politics, with a separate group being formed for religion based discussion of disability. I think thats a good thing. Love the hairdressing stuff! Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 12:33 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hey Jaquie You are right size & familiarity aren't necessarily a bad thing nor are they the only catalyst for a group reaching a 'tipping point'. I think it depends more on the original intent of the group and whether it has served its purpose or not. For example I assume your ongoing group of 1700+ is a lifelong information sharing avenue that you can opt in and out of being very active or merely a lurker as it suits where you are at in your "journey". Some of the groups I have been able to watch have had more specific targets and roles. Our group for parents of people with CP is probably similar to your Angelman community with the exception it has stayed quite local (Aus/NZ) because so many issues around funding/services/equipment tend to need that. Quite a few members also spend time on the International based CP groups and there is subsequent information sharing that way. It would be interesting to see research on the dynamics of groups and how they regulate themselves. I know with the CP group we had one member jack up last year because she had a different opinion to a number of us on the Spastic Centre running a awareness campaign called "CP Champions". There was a group of us who felt defining these 'champions' by their diagnosis and not using "People First Language" was poor form by the Spastic Centre (don't even ask about their organization name. ugh) and were discussing that issue (and slightly 'slamming' TSC). She felt we should move those discussions to another forum because they were essentially political not CP related. She was outvoted by the rest of the members of the group who explained while they weren't so politically active they still wanted to be privy to these discussions and ideas as it helped them formulate their own thinking, views and opinions. It was a very interesting to watch the mechanics of the group at work. And a end note. The Spastic Centre agreed to change their awareness campaign to Celebrating Champions as a result of the high number of complaints and correspondence they received. there's power in these groups. That being said, I also can't underestimate the information and resource that is a Hairdressing Salon with 30 staff and huge clientele. My mum and sister run such a salon in our local community. There is quite a bit of 'ownership' of Mac by the clients as they have followed his journey (and ours I guess). There is always someone who knows something about someone or something else. We often joke the 'world wide web has got nothin' on a hairdressing salon". Not to mention what a great 'educational role' it plays as people start to learn why "their" Mac isn't going to the special school, why we don't do mainstream physical therapy etc. Cheers Gina -------------------------------------------------------------------------- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, 25 April 2009 1:20 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Thanks Gina - cool article! Online support groups have been my lifeline too - everything good I have learned about anything, from how to cope, how to deal with eli's medical needs, disability theory and politics is all from online groups. The only thing which is different in my experience is I have not had the sense that size is bad or that familiarity is detrimental - I've been active in the online Angelman community for 5 years and we have, I think, 1700 members and its an amazing experience. Any hour of the night or day there is another parent online who can help you. Those relationships can be real too - our trip to Canada and the US 3 years ago to learn about how to transition Eli into an inclusive adult life was designed around meeting and staying with families we had only ever me online. It was awesome....and the genesis of the amazing life Eli has now. As a group, it is interesting how much in common attempts at early intervention are around the world, and also how universally futile....lots of us decide to just quit therapy or to redirect it after hearing the experiences of other parents. Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:11 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney FROM: Gina Wilson-Burns Hi All OK, just some other thoughts of mine around the concept of Early Intervention. There isn't really a point to it more food for thought as I try to understand what has/can change in this area. As always with me. not fully resolved thoughts or views, just emptying my brain of stuff kicking around in there. Cyber Intervention vs formal Early Intervention Where does this fit in the concepts and re-thinking of Early Intervention. A new(ish) phenomonen in the world of parenting and specifically disabilities is the concept of the 'on-line support group' which has been around in a fairly significant format for the last decade. This takes the old adage "it takes a village to raise a child" to a whole new level. I know I am often accused by my family a going for "global domination" (or at least taking the whole world to raise a child) when it comes to raising Mac. I have a young guy in Italy (Masters in Robotic Technology) working with me on a Robotic Augmented Independent Mobility device for Mac, our project kicked off this month. I essentially 'stalked' him on YouTube when researching who I felt was the best in the world at using the Lego NXT robotic technology. I have cyber-friends (approx 12) scattered throughout the US, Canada etc who are part of the on-line support group I joined back in October 2001 when I (and they) suffered miscarriages. They were still there as a very tight knit support group when our daughter Meg died just after birth due to a brain haemorrhage in 2002 and a few had gone on to have subsequent miscarriages or fertility complications of their own. They were there during Mac's early start in life and subsequent brain injury during the years 2003-2005. That group eventually disappeared as everyone got busy with their own new babies and busy lives although groups of two or three maintained email contact with one another. There is, I believe, a tipping point with some groups where they reach a certain size or familiarity and inevitably splinter. When a group disbands this is quite an emotional time if some members are still relying on this support. But as with everything else you move on, some find a new group, others learn how to stand on their own two feet and find their reliance on such groups diminishes. In 2005 I linked into an Australian based on-line Yahoo group of parents with children with Cerebral Palsy - there are about 200+ members (no service providers) and it is the most amazing resource available because you deal with everything from funding supports, feeding issues, sleep issues, family issues, social, school, political etc. You can bitch and moan about anything, you can do so at any time of night or day, you can do so from your own home. Other global groups I have been part of include one with the parents doing the physical therapy program we travel overseas for, 'alternative treatments for brain injuries', 'tube feeding groups', 'organic food groups', acquired brain injury groups (although I found too much snobbery in the Acq.BI group - I didn't realise there were people out there with a sense that if you "acquire" a brain injury you see yourself as 'superior' to someone born with a brain injury or disability. an interesting insight (but off topic). The groups dealing with disabilities/diagnosis mean you are provided information or sharing insights you don't often get from the non-profits, government, medicos, therapists etc. You help and are helped with diagnosis, challenges, illnesses etc by people who are or have been through similar things. Yes, you are a grouping made up of people based on a diagnosis - but you are a cyber group. These types of groups help you maintain your "real life" relationships because you are seeking out supports specific to your child's (or your own) diagnosis away from the grouping of your friends and family and seek their assistance for things they can help with rather than making them feel like they are out of their depth or unable to assist. Some of the group members become good friends, but not necessarily "because you both have a child with CP", more because you have found someone you would, had you met in 'real life', probably have been friends with anyway. On-line groups remove the 'distance barriers' they breakdown the remoteness for rural dwellers and the sense of isolation for city dwellers. Social Networking sites I believe also have a role. They can help families with a child with a disability maintain the sense of normality. If you post, just as your friends do, the milestones, delights, concerns, troubles of your children then you help remove the 'fear factor' many friends and family have. You promote the naturalness of disability, you educate just by doing. For some of you this Family Voices group may be your first insight into an online sharing/support group. For me it is one in a long line of groups without which I hate to think where I would be or how "sane" I wouldn't be. Yes, I live and breath by the cyber world. I buy stuff off ebay, amazon, etsy et al. I blog Mac's school journey and contribute to a group blog called "equal not special". I have recently been reunited with my old original cyber group friends on Facebook - time has not diminished the camaraderie we feel for one another, although our "need" for one another has gone. I plan to establish on-line sites to help Mac and others with 'No Voice" where children around the world can provide voices for them, another where kids can help write stories to capitalise on the verbal skills Mac and others have. The online world opens up the entire world to us and we use it to our advantage - I think my family is right - I am going for global domination. So are their any risks to online supports? Sure. someone could steal my identity, but after a few weeks living as me, I am pretty confident they will give it back J But seriously, there is, as with all online options, the chance you will get too entrenched in that world and retreat from your real world. You get tired of dealing with the inefficiencies of the "real world" - so there is a danger. For the families of children with complex medical needs or significant physical disabilities it is easy to retreat. When you need a power outlet to keep you kid alive for feeding or breathing - it is hard to leave home. NSW Govt will NOT provide you with a portable feeding pump if you need a pump. We overcame this by purchasing a portable pump of Ebay (in Alaska) - they are usually well over $1500 new. We have since had that pump shared around the local region to other families who need access to a portable feeding pump. One child was not going to be allowed to leave hospital without a pump, so I got a call from the Service Provider asking for advice (why are they getting paid??? - the family had given them my name as someone who might know what to doJ) I had my spare pump at home so dropped it round, trained the family etc. Mac's feeding tube became dislodged from his tummy last year, we were in Wollongong. The hospital there didn't know what to do, Sydney Children's hosp were not much better when I called them - their gastrostomy nurse was away. In the end we left the hospital, drove home to Nowra and used a 'spare tube' from one of the other kids in town. We have since set up an online email group of the families we know with feeding tubes. It took weeks for Mac's new tube to arrive. We have since had to share one of Mac's spare tubes to another family because there was a batch fault in the tubes they had been supplied and in NSW you are only allowed two tubes a year! Sometimes it is just too hard to get out and about with your friends. say you want to go the beach but a wheelchair suitable for that terrain is either not available in Australia or costs upwards of $15K. A wheelchair vehicle costs $40K and a modification to take a chair is an additional $35K. It gets very easy to retreat from they physically inaccessible exorbitantly expensive world at times. Friends stop asking after you say 'No' a number of times. Provided there is push and focus to make mainstream life accessible and acceptable these risks will be reduced. We need to get rid of people in jobs for jobs sake in the disability sector who make life more difficult for families. Every person working in this industry should have a long term goal that they will become irrelevant. Wouldn't it be nice to think that one day, having a disability will be so inconsequential there will not be a 'disability industry' only the tail end of an 'inclusion industry'. Meg, I see your 'long wind-ed-ness' and up you with 'exhorbitently wordyness'. Cheers 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: Thursday, 23 April 2009 10:35 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney As requested. Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 23 April 2009 10:32 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Catherine - could you give us the link to this conference info or attach the flier? Thanks heaps Anita Sent from my BlackBerry? from Optus -------------------------------------------------------------------------- From: Family Voices Date: Thu, 23 Apr 2009 10:26:08 +1000 To: Subject: Re: FV: Early Intervention from Meg Sweeney Family Advocacy would be happy to support a parent from NSW attending the event as a speaker eg airfare, accom costs, assistance with approach for the paper etc. I think there will be lots of professional bodies giving papers. A well thought through and delivered paper given by a parent re the parent perspective, could really get them thinking. The theme for this conference is Strengthening Connection, Building Communities. It's begging for us to be there in some capacity. Looking at the flier, they appear to be inviting new ideas. Reading through the points that they are looking for input into, there are at least three that have been touched on via this familyvoices thread: 1. Children with disabilities and their families (attachment perspective) 2. Children with disabilities and their peers in the wider community (inclusion) 3. Families with and without children with disabilities (family support networks) Megs, Gina's, Jill's and Miriam's thoughts nail these three points beautifully one way or another. The abstracts need to be in by 30th April, so you've got 7 days to decide! I think its an opportunity too good to miss.... I reckon there is a paper that could be pulled together just from this thread! Catherine From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 3:48 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Good point Catherine I could try and prepare an abstract from a Parent (of a young child) perspective (providing I finish our BAS tonight eek) and someone was able to assist with advice etc on the best approach. Alternatively I think Family Advocacy (someone?) could represent being a NSW based conference, or Meg because what she has to say is important, Miriam because Port Augusta is seemingly moving along a better path/direction or Darrell because he 'just knows stuff'. I had the importance of non-segregated pre-school opportunities hit home last night. One of Mac's classmates who also went to Long Day Care with him since they were about 3yo is having his 6th birthday party this weekend. The venue is the local Animal Park - his reason for choosing that party venue. because he thinks Mac will like the animals. amazing, wonderful, beautiful. Gina -------------------------------------------------------------------------- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:34 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Okay, so who's going to give this important paper at the Early Intervention Conference??? Catherine Hogan From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 12:23 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Yes, Meg. Great reading! Full of wisdom & passion. Love someone who is long-winded! And the real kicker .. all of this so-called segregated, "specialist early intervention" which sounds "oh so high tech and scientific" - isn't. No surprise to you but incredibly surprising to those who claim to be evidence-based "professionals". A couple of Canadians we met (Bruce Uditisky and Dick Sobsey) showed this a decade or more ago in their brilliant review. Bob and I have shown this in several of our reviews and together with parent Michelle O'Sullivan, we also examined "early intervention" on the same issues. Same story. No evidence. (attached) We have examined the data on inclusive vs segregated education now back as far as 1932 and found No/none/Nada/Zilch .. comparatives showing segregation as superior. 77 years of "early intervention and educational" practice based upon absolutely no supporting evidence. The Emperor indeed has no clothes. Darrell From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 22 April 2009 5:38 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Great reading Meg, That came just at the right time for me . Im at logger heads with elliot at the moment. yes he is 16 and letting me know it. But i am also his teacher and at this stage there is not much i can do about that. but reading your story and the artice that Anita sent, has realy helped me look at the way I teach. I just love the way every morning is the door to a new day. Anita sorry I have left it so long to get back to you about the teleconfrence but I am a meer male and thinking about more than one thing at a time is a huge challange for me. I wont be able to join in as i will be away, but I think it is important to keep the idea of getting together alive. Darrell if you are reading this you will be so proud of me i have introduced two more pinkys to the keyboard. Cheers AL ----- Original Message ----- From: Family Voices To: familyvoices at inpress.pledgonline.com Sent: Tuesday, April 21, 2009 6:09 PM Subject: Re: FV: Early Intervention from Meg Sweeney Thanks you for the article Anita, You are a mind reader I meant to put a link in to this article however I forgot. People may find the library resource at Family Advocacy in Epping, Sydney (Catherine Hogan is the Director) a helpful place to find all sort of written material, videos and audio tapes about inclusive practice. All sorts of topics are covered with perspectives from families, professionals, and academics. http://www.family-advocacy.com/resources.php Miriam, a mother and father, brother and sisters roles are so vitally important in every family and yet so often overlooked, trivialized or superseded. As Jos gets older I am now meant to assume the role of her career..not likely, I learned that lesson long ago. Joscelyn is excellent at letting me know my place and that, I am proud to say, is the honored role of her mother. Cheers for now, Megs ------------------------------------------------------------------------ From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 10:01 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hi Meg, I won't write much here as your words cover so much and I couldn't really add anything of value to it. But I thought I'd share Michael Kendrick's short article on the Natural Authority of Families. Take care 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. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Tuesday, 21 April 2009 12:40 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention from Meg Sweeney Hello Meg I so agree , we can so easily become the teacher only and miss out on the warmth of the special relationship we have with our child. I loved what you have written and so much of it rings true as a reflection of so many lives. We must keep this discussion going if we are to offer opportunities for new parents to avoid the painful journeys many of us have taken Miriam ------------------------------------------------------------------------ To: familyvoices at inpress.pledgonline.com Date: Mon, 20 Apr 2009 23:37:55 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: Early Intervention from Meg Sweeney Hello everyone I'm sure most of you will know that we are involved in a marathon event not a sprint so will forgive my less than timely comments. I have inserted Jill's thoughts in this thread, as in my reading it captures all the early intervention comments. I have had issues with early intervention since we experienced it nearly 18 years ago. Our family attended 2 official Govt funded services both extremely well supported by the community, 1 in Canberra and 1 in Wagga Wagga in our early intervention career. After concerted attempts to comply with the therapy regimes we were indoctrinated in as being vital to Joscelyn's long term development and opportunities we abandoned the whole thing when Jos was 4 years old. Jos was the main instigator in this move. She entirely resented my transformation into a teacher role and passionately would not comply with any endeavors on my part to teach her anything. At breaking point we were screaming at each other and I had an epiphany, I realised that my daughter hated me, right to the center of her soul she hated me for making her do things that she couldn't do and having the power to do it on a daily basis. A soul destroying moment for a mother. I knew things needed to change and change they did. Firstly I decided that never again was I going to assume that role of Joscelyn's teacher. I was her mother a vital and fundamental role that no one else could fulfill. My main job was to love and cherish her, make her feel safe and at that time repair the damage that early intervention had done to our relationship. Jos had to learn that she could trust me to protect her instead of bully her and I had to learn to enjoy her, let her be my little girl instead of a project. This is bringing back some very painful memories that I haven't reflected on for some time. We still needed assistance and ideas on child development to help Jos but needed the parameters of that information to honor and support our roles of mother and daughter. We found an ordinary Community based pre school whose director was a devotee of child based learning which basically followed the child's interests and strengths while subtly extending their learning experience. We also started attending the local Community Health Service for any therapy they had available at the time. I remember the staff saying 'why are you here, I'm sure you would get better help at the early intervention centre' my reply was "one new graduate knows as much as another new graduate and I trust in your ability" The whole atmosphere at community health was different. I can't really articulate what the '?T' factor was but in hindsight I'm sure it had to do with the ordinariness of it all. This was a place that all ordinary children went that needed a little assistance, it wasn't a life defining place in the family's life, just another appointment in the week. Absent was the subtle "membership of the disabled family" stuff. Joscelyn's development was enhanced by this change not damaged and after several years our relationship grew in mutual respect and intimacy. I know time has marched on however as I witness the delivery of early intervention today not much has changed. Routinely it is in a segregated environment, congregated with other families with diagnosis of developmental disability, under a medical model of fixing the deficits the infant/toddler shows or their condition is notorious for. As I see it the 2 most insidious results of early intervention are: The Natural Order of Parental Ownership The damage Early Intervention causes to the typical relationships in families particularly the parental one. I call it ownership. It's not politically correct in the current times to articulate, but I own my children. I decide what they do, where they go, who they associate with, where and when, what they eat, wear (pity about that), when they go to bed, brush teeth, wear seatbelts, if they can drink alcohol, what sports, music or excursions they attend and what school they go to . I am their parent and they are MY child. This is changing as they grow up however even Daniel, currently a very independent young man overseas at 18 years old, defers to the direction of Todd or myself if he is in over his head because the relationship is reciprocal. We own him and he owns us.we are the Sweeney's a collective unit that is totally unique in operation as each individual family is unique in its own right. Simply stepping into a segregated, congregated environment interrupts this natural parental role. Perhaps these people offering vital help and assistance know best, have specialist knowledge, have experience, know how things are and should be done, we should defer to their experience in relief that we are not alone. As this often is the experience of families with very young infants or toddlers, when the maternal/paternal relationship is still very fragile it is no wonder that the power of the place and messages of how it is going to be from now on take hold. The most powerful message is that others know best, the families natural and proper role of ownership of their child is irrevocably undermined. In addition the integrity of the family also suffers. The future then usually follows a very tedious script of professional based decision making (dressed as parental choice) that in the most part leads to segregated and congregated playgroup, preschool, school, high, respite program, recreation, employment and living arrangements. Sometimes there can be arrogance in families who choose an included pathway for their child in relation to families who have not. This is unfair. Many families remain completely unaware that another life can be had for their child. They are so ensconced in the pathway they have been lead on to a segregated, congregated life that they just don't get exposed to another alternative. Unfortunately many first question what they have always known to be true due to suspicions of abuse, other alarming happenings or sheer luck. Collective ownership of the family unit as a unique culture of its own is a fundamental concept that enables inclusion to occur. We have to have a true sense of validation that we are the decision makers and it is our role to make those decisions as they relate to our loved ones. We have all heard the saying better off with their own kind..I agree..Joscelyn is the Sweeney kind and she is much better off with us having a life that mirrors her brother and sisters and the culture of our family. Isolation of Families with Developmentally Delayed Children from Typical Families Once again the separate place leads to a separate life. The talk is that other families with a shared experience will be the only ones that understand, can empathise or lend support. It is true that many families look to others with shared experience for support, to share stories, experiences and expectations. As families attend the special need playgroup often the ordinary playgroup is left behind, then special school P+C takes precedence over ordinary, fundraising for the respite service is important too. Subtly over a few years many families end up only associating or knowing other families with children with disability. This then leaves families and our community in general in polarised positions. The family is now isolated in the help it can naturally call on for baby sitting or a general hand as most of the other families they know are equally as stretched. The conversations about child raising often revolve around disability as the cause for issues due to the collective families being isolated from typical developmental processes as children grow up and the impact this has on relationships between the adults and siblings in the family. This cycle continues until paid support is vital in family's lives usually in the form of respite due to the absence of natural supports that the family can call on. Equally, typical families are blamed for not having empathy or being accepting people with disability in the community. How can people show empathy or understanding if they are never given the chance to experience someone's life and grow in knowledge and understanding as we do? I think it is a fundamental flaw in thinking that typical families cannot understand and empathise with the situation families find themselves in. This is the essence of inclusion, to remain connected to your typical family, work, sporting, faith, neighborhood etc and bring them along on your families journey with you. I think that many families become isolated over time as the duties in relation to the disability specific segregated activities are all consuming, this does not allow the time for the typical relationships, and they gradually ebb away. Typical relationships need to be vigilantly safeguarded, ditching the fundraising duties and hosting a BBQ for all your neighbors is a better long term use of energy if you want your child to have a good life in the community and be known. Perhaps Early Intervention at its best is a resource that can go to where all children are and offer advice in typical ways that follow typical developmental cycles and behaviors of both children and parents alike. Early Intervention in its current guise simply intervenes early to alter typical relationships and pathways that children and families experience..its a real shame, a very complex issue to overcome. I note that two of the topics in the call for papers are in relation to: children with disabilities and their families (attachment perspectives) families with and without children with disabilities (family support networks) so maybe all is not lost, / Biog / Abstract (e.g. Smith-Biog.doc). I'm sure Jill and Miriam have seen swings and roundabouts in relation to this issue over the years. This has taken all night so stay tuned if you are interested in my musings in relation to the other topics, I will get there ...I guess you all know that I'm long winded ! Kindest regards Meg Sweeney P.S I'm not sure if I should thank W.A or S.A for the dust storm this week however if any of you have a neighbor who is missing a back paddock please let them know it's in my pool. From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com]On Behalf Of Family Voices Sent: Friday, 10 April 2009 12:54 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Darrell I wish I had had you by my side when we were writing submission for our funding all those years ago, you are so clear thinking about this and it was great to read. Thankfully many many families over the year have made it very clear what was needed and we just follow their lead. Some have found wonderful journeys for themselves but sadly there are still many who struggle and fall through the gaps. So there is much work to still do. Great hearing news from so many new people in my life Happy Easter Miriam ------------------------------------------------------------------------ To: familyvoices at inpress.pledgonline.com Date: Thu, 9 Apr 2009 16:52:45 +0800 From: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention "Early intervention" has long been a searing thought in my mind. What is it? For me, it is a time not a program. It is a time when one comes to discover sadly, that the world has some pretty ridiculous labels for people based on a medical view of the world and "brokenness" and even more sadly that the world has developed a set of historical "habits" that includes segregation and congregation that they have passed down through the generations- not because they are "good" or not because they "work", but because we have always done it this way. These ideas about kids are not known to us until we enter the world of labeled people. It is a secret mostly kept from us until we are touched by this world. Finding out about the secret early helps explain the caziness one faes so early and vulnerable to these things. Early intervention is a time when our first and then ongoing impressions of what to do and what to think are powerfully touched by who we meet and what they show us. Sadly inclusionists are few in the world and fewer in medical based or designed services, so we are likely to meet people who think early intervention is not a time of determining one's pathways in life but a "hurried program" of therapy" and "getting ready" (most likely a specialised one based around your knee or elbow or labeled broken bit, as medical people like to do.) It will likely have no moral or scientific basis but that doesn't matter. It is "the way we've always done it", so please join in. It is the gateway away from a typical life. It where parents and kids learn the rules of being "different". Intervention is someone doing something and this case early. We who promote inclusion need to see that, because of our history, the door will be wide open for vulnerable people to fall for this historical habit, not because it is good or correct but because it is BIG and omnipotent . We can easily become addicted, if not careful, to service planned and service dominated lives. The path to segregation is a multi-lane freeway. The path to inclusion is an almost invisible pathway through the woods, with signs aplenty - under construction. Of course there is a shred of truth in early development being powerful. Kids do learn more before school than they will throughout their school career but this only speaks to the important role and seniority by TIME of parents as senior partners. But this not a disability thing but a generic developmental thing. So why do we hurry labeled children through specialist programs and not typical children? This we have to ask about each child. Of course if s/he is delayed in language and can develop language, starting early to develop language makes sense. But segregating him/her with others who also cannot talk, doesn't. But that is what we are "sold". Miriam is so wise. We need to avail ourselves but not force our views. If we are "chosen" as guides, we need to be mindful of the goldilocks principle. Not to heavy not to light but just right. We need to be mindful of the "gap" not being one of distance for typical development but gap from having a typical life. dw From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Wednesday, 8 April 2009 9:25 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Early Intervention Miriam Wonderful - I hope they will consider submitting. I did have you in mind when I send the email out. Gina On 08/04/2009, at 10:57 PM, Family Voices wrote: It is really so good to read all the messages going back and forth and see each one of you in my mind again. I really enjoyed my time in Canada, and it left me much to consider and to reconsider. Sorry Helen to hear about the storm I did wonder if you were alright. I am interested in the Early intervention Conference and will encourage the staff in Port Augusta to present an abstract, We have worked so long to develop a project which really meets the needs of families. It is our belief that early intervention is not about the child, well of course it is, but it is more about the family, the whole family. At the very early stage of discovery the fact that a son or daughter might have a developmental delay the family needs first of all to stabilize. It needs time to this. This family, the whole family needs time to overcome the feeling off loss of skills to equip it for the new world and find a different journey from the planned one We all know how vulnerable people are at this stage in their lives and need support. They need the support they choose to ease the pain and they need to do this at their own pace. They need to identify for themselves what would be the most helpful support If we are the ones selected by them to offer support at this time we need to start where they are and remain with them until they are ready to move on. Each move taken too quickly might cause a valuable piece of learning to be lost So not too heavy with the advice or direction and for that matter at this stage the Advocacy, but more to be there to listen until the pain eases. The journey that then develops is their own, and they are ready to explore ways to take it forward This form of early intervention is not about segregation it is about facilitating families to remain within the arms of extended family friends and community and allowing them to begin to discover their own journey If they are clear about that journey however small it is, we have seen, strength and commitment following on. This process has shown that a small success has encouraged families to begin the journey to think for themselves. They learn to call the shots, they decide when and when to bring the experts in . They bring the expert in when the time is right for them When this happens it works because the direction is born of the family's present needs and not the needs of others who are keen to present them with a direction The Special needs Program in Port Augusta, (Sorry about the word Special but it was named so long ago now) has worked to this philosophy for 25 years. It is a program directed and controlled by families for families and changes every time a new family walks through the door.( no one is refused and there is no waiting list. The only criteria for acceptance is that the family must make its own referral) I do agree it must be about the support and development of families and there does need to be a close look at how we see early intervention and what we see its purpose is As far as I am concerned it means facilitating the family to learn the skills of self direction and determination right from the beginning. We so need all these skills when it comes to fighting for the facilities to meet the educational and development needs of our Sons and Daughters. Miriam Hi Everybody - great to be in contact again and enjoying all the chats! I was about to put my bit in when this email arrived! No! we don't need Early Intrvention Centres ( absolutely agree with all you said about those Gina) but I don't think ECIA is about that. ECIA is about creating environments which support the inclusion of children who have a disability into community. Ths includes all of the topics which are mentioned in the Call for Papers but with an inclusive focus. Usually features presenters who have had very positive experiences with inclusion, both educators and parents. Of course there is always 'degrees' of inclusion presented, but on the whole pretty positive. There is an ECIA in every state and there is a National biennial conference. So anyone who has a great story to tell about their early inclusion exeriences, do it! Even, when it has not gone well, telling educators and other families why and how it could have been so much better is a great way of getting the message across. My thoughts about the struggles we have with the 'special' education culture, is that it begins at birth or time of diagnosis when we as parents are indoctrinated with the information that we have a 'special' child who has 'special' needs who will need 'special' care and we are 'special' parents who now have a 'special' family. So it goes on with assumptions that 'special' education, 'special' classes and 'special' schools etc are all part of the 'special' continuum of life mapped out for individuals who have a disability. So some of my energy for the moment is trying to head off this 'special' stuff before it gets started and maybe there's a chance that eventually it will disappear off the education radar! One has to be optimistic!!!!! Still distilling my Canada experience, but really interested in the conversations re individualised funding. My son Ben had a great time while I was away; the longest time that he had been on his own, in charge of himself and the house. He was very pleased with his efforts so I jumped in very quickly to ask him (yet again!) if he would like to live in his own house and do it all the time. "No" said he, "I like it here!". Methinks I will have to up his board considerably and see if he still likes it so much! Cheers all Jill ----- Original Message ------------------------------------------------------------------------ ------------------------------------------------------------------------ To: familyvoices at inpress.pledgonline.com Date: Wed, 8 Apr 2009 10:01:24 +1000 From: familyvoices at inpress.pledgonline.com Subject: FV: ECIA NSW Conf09 Hi All Here is a call for papers if anyone thought it was appropriate to present inclusive ideas at a conference around Early Childhood Intervention. I will discuss with Shawn to see if there is anything we/I could contribute and possibly submit an abstract - my background thinking is by establishing early intervention centres we are setting the scene for ongoing segregation rather than using early intervention centres as a resource for providing intervention in inclusive settings. We don't tend to see early intervention being a place to educate families on options/ideas . I understand in the early days with children like Mac the first few years are concentrating on just keeping the kid alive and you are so easily sucked into the segregated setting as it is often promoted as safer, less germs, smaller groups blah blah blah - and for many families it is then hard to extract yourself out of this setting. Just food for thought in any case. Regards Gina ------------------------------------------------------------------------ From: Early Childhood Intervention Australia (NSW Chapter) [mailto:admin at ecia-nsw.org.au] Sent: Tuesday, 7 April 2009 5:36 PM To: Early Childhood Intervention Australia (NSW Chapter) Subject: ECIA NSW Conf09 Dear Members, Attached is the Call for Papers for this year's State Conference Strengthening Connections - Building Communities to be held in Newcastle, 26th & 27th October. A paper copy should be arriving in your letterbox over the next couple of days. Please forward this e-mail through your local networks and to any of your colleagues or contacts who you think may be interested in presenting a workshop or paper at our conference. Kind regards, Rosemary Flavel Executive Officer Early Childhood Intervention Australia (NSW Chapter) Inc. P.O. Box 4752 NORTH ROCKS 2151 Ph: (02) 9873 2593 Fax: (02) 9872 8251 E-mail: rflavel at ecia-nsw.org.au Web: www.ecia-nsw.org.au ------------------------------------------------------------------------ I am using the Free version of SPAMfighter. We are a community of 6 million users fighting spam. SPAMfighter has removed 1460 of my spam emails to date. The Professional version does not have this message. ------------------------------------------------------------------------ Click Here View photos of singles in your area __________ Information from ESET NOD32 Antivirus, version of virus signature database 3994 (20090407)__________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com ------------------------------------------------------------------------ Get the new Windows Live Messenger. 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Name: not available Type: image/jpeg Size: 36313 bytes Desc: not available URL: From familyvoices at inpress.pledgonline.com Sun Apr 26 18:30:03 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Mon, 27 Apr 2009 11:30:03 +1000 Subject: FV: Reciprocal visit and inclusion movement In-Reply-To: References: <01e501c9bcc8$941672b0$bc435810$@Speed@mamre.org.au><007401c9bcfa$c626fea0$5274fbe0$@com> Message-ID: <009701c9c6d7$b10a99a0$131fcce0$@Speed@mamre.org.au> 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 Thu Apr 30 02:51:38 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 30 Apr 2009 19:51:38 +1000 Subject: FV: Believing in our kids/Communication In-Reply-To: <000901c9ba31$047155b0$0d540110$@net.au> References: <63F017FC9B34084F8D216E83F9E0184D082BA97B@amsterdam.ucstaff.win.canberra.edu.au> <003401c9b97b$0ea32a60$2be97f20$@net.au> <001a01c9b984$02d588a0$088099e0$@net.au> <000901c9ba31$047155b0$0d540110$@net.au> Message-ID: Hello all Well I am uck. I now have quite a bit of info on the upcoming and on the ground devices to help with communication and still nothing actually in Sarah's hands. I am going to try and attach what I have so far. Sarah has been using a laptop computer which lasted 2 years. We have a program called write out loud and larger font key board that we use when FC is working for all ie Sarah and I. School is not happy to take this on. We have also been using pen and paper, cue cards for want of a better description. Ie laminated sheet "yes ---- something else ---- no" and some board maker choices. Sarah is using more words as more people take the time to listen and wait for a response. What do people think of the Ipod and program? You are receiving this email because you asked to be notified when Proloquo2Go was released. And the good news is Proloquo2Go is now officially available! You can check out more information about Proloquo2Go including video footage at http://www.spectronicsinoz.com/product/proloquo2go (Australia) or http://www.spectronics.co.nz/product/proloquo2go (New Zealand). http://www.spectronicsinoz.com/product/pocket-aceI think this is going to be a rapidly changing area though - with some really exciting models coming out in the US soon, like the Always Innovating Touchbook http://www.alwaysinnovating.com/touchbook/ Iphone? Then next question is computer for Sarah, the last one was accidently dropped and that was possible because I was saying it was ok to take into bedroom and sit on bed, which really at the end of day I don't think was such a bad thing but it was a bit big and heavy.?? I really like the idea of light, touch screen? Sarah would use her lap top to cruise through my pictures which there were a lot of photos taken with her camera. It was a tool for her to talk with people, she liked watching dvds on and playing occasional games. Sarah is very good with the pad and mouse. The FC is used to slow movement to match the thought process ie she could have up to 60 programs open or more when the computer had enough would seize so would then turn it off and start again. I have to apologize to any family voices out there who don't understand any of this, I am learning everyday all the techno stuff and know for some as a over 45 I could be classed as passed it but I refuse to let that be. Any advice is greatly appreciated. Regards Jane H rom Goondiwindi Jane Warner/Hudson -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, April 11, 2009 9:07 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids Jane, don't bash yourself up over the facilitated communication. I have finally stopped bashing myself up for not doing enough of anything and I can tell you, it feels SO good when you stop. Can you tell us more about what you are doing with Sarah and her communication? Eli's business has turned out to be quite complex in design...he has five staff already and we are only just beginning, but one of the potentially very lucrative strands has been based on me thinking about - if this programming his device is too much for me and too expensive to pay a speechie to do, then there must be other families out there in the same boat. So we've trained two ex Tas to do the programming and now they are so fast they can do it for an affordable rate. It struck me in Canada how many new professional roles ahd been invented to accommodate inclusion. Is there a new professional role which could be created to do this stuff with Sarah? Jaquie :) -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 11:05 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids HI Yes my friends she has worked out the video. Apparently while I was away there was none of the screaming at the tv. Alan just got home walked in to say hi and got DOOR, so he replied ok up yours too. Charming I know but that's their relationship and they love each other. I so know Jo what you are talking about with the ear. Sarah has been saying William for years, Sarah's brothers name is Bill on his birth cert it is William John Charles Warner (at the time I was married to the bushie) anyway we always thought Sarah was so very clever or had the blue blood of her Paternal grandparents Ha Ha and was saying William for Bill. In year 8 the brand new year 8 special ed teacher whose past profession was a horse whisperer said "Jane Sarah is saying lie down." Well I didn't know so he laid down and Sarah pointed and said William. For a long time she would say Woe I thought it was video it was NO. Idiot mother. We have as of last year bought facilitated communication in, that's a journey and I bash myself up regularly that I don't do enough. Sarah is also eye pointing which a friend off her circle picked up those just blows me out of the water. I think we have to be careful not to strangle our selves with our Super Mum capes. I know we are super mums but we are also human. One of the things sarah did with FC to me last year was "Mum needs help", and "she is frustrated that she does not have her own voice" whilst that is heart crunching I know she loves me and understands I am doing the best I can I am sure your Dan feels the same way because you are a Super Mum. Even if we only wear the tights in private. The wiggles thing I understand too, Sarah has moved to Hi Five, Harry Potter, The Christmas Story. I struggle with the age appropriate as well. 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: Friday, April 10, 2009 12:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids Hi There, Jaquie has been talking to me a lot about this for some time now and I have been trying to "hear" what Daniel is communicating to us. I have decided that "my ear" - let me explain, y'know how some people have "an ear" for music and can just pick it up - well I am comparing this to picking up on our kids sounds but unfortunately I am really struggling with it because I just don't think I have "an ear" for it, though I do believe Dan is saying stuff all the time and others will report back to me that they think he said "nu" for no, "whu" for what and so on - Dan and I are stuck as he has a mum who is having a lot of trouble distinguishing the "nu", "mu's and so on and it's really frustrating for both of us. Some time ago I heard a lady being interviewed who has worked out sounds that babies make and has interpreted them to what the sounds mean - hungry, tired, windy etc and she's made a dvd for new mums to learn from - I can't tell you how much I have wished I had "an ear" for sounds like this lady does as I know Dan would benefit. Anyhow I will persevere and hopefully Dan will have the patience to keep on trying. It's great to hear you have worked it out and this discussion will help me pay more attention. The other thing I have been trying to do is move Dan from the "Wiggles", Playschool" "Elmo" and so on, Jaquie introduced me to You Tube where I can find stuff like "The Wiggles" singing in a different language or dubbed with teen appropriate music that even has swear words in it (ooommm arrrr). His favourites are the ones with the different languages but at least it's a start! Did Sarah work out how to turn the dvd on? Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 9:43 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids HI Jaqui are saying they are the words Eli uses? Sarah vocalizes a lot. Like right now one could question she is screaming in her room, but in I think what is happening is she is vocalizing the fact that she has thrown her remote at the cupboard and we haven't bought a new one. She now has to map her way through the dvd/vcr controls on the machine to get what she wants on and well as she loves pushing buttons. (so does her mother) literally. If I go in and ask her she tells me DOOR that means go out and shut the door. Sarah says GO AWAY that has I feel a range of things. I would like to go somewhere. If someone arrives she can say go away. Great sometimes but this means you have arrived hi. Hi can be bye one speechie told me bye is easier to say physically that Hi? William for Sarah means lie down. I totally agree with people responding to our children, Sarah assesses a person the moment they come through the door if they talk to her, listen and respond she will mostly give back unless of course she doesn't like them. If they don't take the time of day and look at her, as though she is from another planet she shuts them out. Is very interesting to watch and is also hard to watch as I worry she is excluding herself from people. My experience in the last 18month especially has been to give her every means of being able to communicate to people. Sorry got a bit carried away. Is wonderful to share this. The screaming has stopped. 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, April 10, 2009 11:24 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids Thats awesome Sheree!!! Way to go Isaac!!!! One thing which we have focussed on with Eli is just questioning this whole notion of a person being non-verbal. A lot of people labelled non-verbal are actually highly verbal - they usually have a highly developed personalised language in terms of being able to use their vocalisations to communicate. We have found speech therapists generally don't bother with what can be a really powerful way for people to use their voice. Eli can say so many things now using highly developed intonation - not words, but actually I think he is emotionally more eloquent than most people...I love you, I need help, I think you might be a therapist and I hate you, I'm angry, fuck off, I want something, I'm frustrated, I think you suck and I'm going to my room now and I'm slamming the door on you....I don't actually like cats very much, I don't want to, I really want to, I wish you could stay, I want you to go, this food is really really good, whats for dessert why is my dessert taking so long? Etc etc etc.... I think its really important to ensure that everyone responds consistently to our 'non-verbal' kids when they make sounds so they can develop a more sophisticated verbal language. Jaquie :) -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 9 April 2009 9:18 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Believing in our kids My son Isaac who is "non verbal" clearly called me Mum today. I had given up and started thinking of him as non verbal but since coming back from Canada I have gone back to trying to teach him a few more things and voila, he has started to talk. It was a great day. 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. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.50/2051 - Release Date: 04/09/09 19:01:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.50/2051 - Release Date: 04/09/09 19:01:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.52/2053 - Release Date: 04/10/09 18:27:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu Apr 30 05:04:36 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 30 Apr 2009 20:04:36 +0800 Subject: FV: Believing in our kids/Communication In-Reply-To: References: <63F017FC9B34084F8D216E83F9E0184D082BA97B@amsterdam.ucstaff.win.canberra.edu.au> <003401c9b97b$0ea32a60$2be97f20$@net.au> <001a01c9b984$02d588a0$088099e0$@net.au> <000901c9ba31$047155b0$0d540110$@net.au> Message-ID: <000c01c9c98b$d5562700$80027500$@net.au> How good are Sarah's fine motor skills? I think to use the i-phone you'd need to be quite dextrous. If she can handle a small touchscreen then I'd say go for it. You know the Fujitsu Lifebook I had in Alberta? That is very small and light and works fine as a communication device. I think Gina got one second hand...is that right? Off ebay for about $1 000. You have to be gentle with them though. Have a written about the Panasonic toughbook? They are everything proof - you can drop them, chuck them out the car window, water and drool proof. Eli has had his for two years and it has survived very rough treatment. New ones are $7 000. You can buy second hand ones a lot cheaper - this can be a bit risky apparently. Eli's business bought a second hand one the other day for about $1000 and they have refurbished and so far so good. Jane has Sarah used a touchscreen before? Jaquie J From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 30 April 2009 5:52 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids/Communication Hello all Well I am uck. I now have quite a bit of info on the upcoming and on the ground devices to help with communication and still nothing actually in Sarah's hands. I am going to try and attach what I have so far. Sarah has been using a laptop computer which lasted 2 years. We have a program called write out loud and larger font key board that we use when FC is working for all ie Sarah and I. School is not happy to take this on. We have also been using pen and paper, cue cards for want of a better description. Ie laminated sheet "yes ---- something else ---- no" and some board maker choices. Sarah is using more words as more people take the time to listen and wait for a response. What do people think of the Ipod and program? You are receiving this email because you asked to be notified when Proloquo2Go was released. And the good news is Proloquo2Go is now officially available! You can check out more information about Proloquo2Go including video footage at http://www.spectronicsinoz.com/product/proloquo2go (Australia) or http://www.spectronics.co.nz/product/proloquo2go (New Zealand). http://www.spectronicsinoz.com/product/pocket-aceI think this is going to be a rapidly changing area though - with some really exciting models coming out in the US soon, like the Always Innovating Touchbook http://www.alwaysinnovating.com/touchbook/ Iphone? Then next question is computer for Sarah, the last one was accidently dropped and that was possible because I was saying it was ok to take into bedroom and sit on bed, which really at the end of day I don't think was such a bad thing but it was a bit big and heavy.?? I really like the idea of light, touch screen? Sarah would use her lap top to cruise through my pictures which there were a lot of photos taken with her camera. It was a tool for her to talk with people, she liked watching dvds on and playing occasional games. Sarah is very good with the pad and mouse. The FC is used to slow movement to match the thought process ie she could have up to 60 programs open or more when the computer had enough would seize so would then turn it off and start again. I have to apologize to any family voices out there who don't understand any of this, I am learning everyday all the techno stuff and know for some as a over 45 I could be classed as passed it but I refuse to let that be. Any advice is greatly appreciated. Regards Jane H rom Goondiwindi Jane Warner/Hudson -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Saturday, April 11, 2009 9:07 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids Jane, don't bash yourself up over the facilitated communication. I have finally stopped bashing myself up for not doing enough of anything and I can tell you, it feels SO good when you stop. Can you tell us more about what you are doing with Sarah and her communication? Eli's business has turned out to be quite complex in design...he has five staff already and we are only just beginning, but one of the potentially very lucrative strands has been based on me thinking about - if this programming his device is too much for me and too expensive to pay a speechie to do, then there must be other families out there in the same boat. So we've trained two ex Tas to do the programming and now they are so fast they can do it for an affordable rate. It struck me in Canada how many new professional roles ahd been invented to accommodate inclusion. Is there a new professional role which could be created to do this stuff with Sarah? Jaquie :) -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 11:05 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids HI Yes my friends she has worked out the video. Apparently while I was away there was none of the screaming at the tv. Alan just got home walked in to say hi and got DOOR, so he replied ok up yours too. Charming I know but that's their relationship and they love each other. I so know Jo what you are talking about with the ear. Sarah has been saying William for years, Sarah's brothers name is Bill on his birth cert it is William John Charles Warner (at the time I was married to the bushie) anyway we always thought Sarah was so very clever or had the blue blood of her Paternal grandparents Ha Ha and was saying William for Bill. In year 8 the brand new year 8 special ed teacher whose past profession was a horse whisperer said "Jane Sarah is saying lie down." Well I didn't know so he laid down and Sarah pointed and said William. For a long time she would say Woe I thought it was video it was NO. Idiot mother. We have as of last year bought facilitated communication in, that's a journey and I bash myself up regularly that I don't do enough. Sarah is also eye pointing which a friend off her circle picked up those just blows me out of the water. I think we have to be careful not to strangle our selves with our Super Mum capes. I know we are super mums but we are also human. One of the things sarah did with FC to me last year was "Mum needs help", and "she is frustrated that she does not have her own voice" whilst that is heart crunching I know she loves me and understands I am doing the best I can I am sure your Dan feels the same way because you are a Super Mum. Even if we only wear the tights in private. The wiggles thing I understand too, Sarah has moved to Hi Five, Harry Potter, The Christmas Story. I struggle with the age appropriate as well. 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: Friday, April 10, 2009 12:28 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids Hi There, Jaquie has been talking to me a lot about this for some time now and I have been trying to "hear" what Daniel is communicating to us. I have decided that "my ear" - let me explain, y'know how some people have "an ear" for music and can just pick it up - well I am comparing this to picking up on our kids sounds but unfortunately I am really struggling with it because I just don't think I have "an ear" for it, though I do believe Dan is saying stuff all the time and others will report back to me that they think he said "nu" for no, "whu" for what and so on - Dan and I are stuck as he has a mum who is having a lot of trouble distinguishing the "nu", "mu's and so on and it's really frustrating for both of us. Some time ago I heard a lady being interviewed who has worked out sounds that babies make and has interpreted them to what the sounds mean - hungry, tired, windy etc and she's made a dvd for new mums to learn from - I can't tell you how much I have wished I had "an ear" for sounds like this lady does as I know Dan would benefit. Anyhow I will persevere and hopefully Dan will have the patience to keep on trying. It's great to hear you have worked it out and this discussion will help me pay more attention. The other thing I have been trying to do is move Dan from the "Wiggles", Playschool" "Elmo" and so on, Jaquie introduced me to You Tube where I can find stuff like "The Wiggles" singing in a different language or dubbed with teen appropriate music that even has swear words in it (ooommm arrrr). His favourites are the ones with the different languages but at least it's a start! Did Sarah work out how to turn the dvd on? Jo -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Friday, 10 April 2009 9:43 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids HI Jaqui are saying they are the words Eli uses? Sarah vocalizes a lot. Like right now one could question she is screaming in her room, but in I think what is happening is she is vocalizing the fact that she has thrown her remote at the cupboard and we haven't bought a new one. She now has to map her way through the dvd/vcr controls on the machine to get what she wants on and well as she loves pushing buttons. (so does her mother) literally. If I go in and ask her she tells me DOOR that means go out and shut the door. Sarah says GO AWAY that has I feel a range of things. I would like to go somewhere. If someone arrives she can say go away. Great sometimes but this means you have arrived hi. Hi can be bye one speechie told me bye is easier to say physically that Hi? William for Sarah means lie down. I totally agree with people responding to our children, Sarah assesses a person the moment they come through the door if they talk to her, listen and respond she will mostly give back unless of course she doesn't like them. If they don't take the time of day and look at her, as though she is from another planet she shuts them out. Is very interesting to watch and is also hard to watch as I worry she is excluding herself from people. My experience in the last 18month especially has been to give her every means of being able to communicate to people. Sorry got a bit carried away. Is wonderful to share this. The screaming has stopped. 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, April 10, 2009 11:24 AM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Believing in our kids Thats awesome Sheree!!! Way to go Isaac!!!! One thing which we have focussed on with Eli is just questioning this whole notion of a person being non-verbal. A lot of people labelled non-verbal are actually highly verbal - they usually have a highly developed personalised language in terms of being able to use their vocalisations to communicate. We have found speech therapists generally don't bother with what can be a really powerful way for people to use their voice. Eli can say so many things now using highly developed intonation - not words, but actually I think he is emotionally more eloquent than most people...I love you, I need help, I think you might be a therapist and I hate you, I'm angry, fuck off, I want something, I'm frustrated, I think you suck and I'm going to my room now and I'm slamming the door on you....I don't actually like cats very much, I don't want to, I really want to, I wish you could stay, I want you to go, this food is really really good, whats for dessert why is my dessert taking so long? Etc etc etc.... I think its really important to ensure that everyone responds consistently to our 'non-verbal' kids when they make sounds so they can develop a more sophisticated verbal language. Jaquie :) -----Original Message----- From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices Sent: Thursday, 9 April 2009 9:18 PM To: familyvoices at inpress.pledgonline.com Subject: FV: Believing in our kids My son Isaac who is "non verbal" clearly called me Mum today. I had given up and started thinking of him as non verbal but since coming back from Canada I have gone back to trying to teach him a few more things and voila, he has started to talk. It was a great day. 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. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.50/2051 - Release Date: 04/09/09 19:01:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.50/2051 - Release Date: 04/09/09 19:01:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.52/2053 - Release Date: 04/10/09 18:27:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu Apr 30 05:46:08 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 30 Apr 2009 22:46:08 +1000 Subject: FV: Believing in our kids/Communication In-Reply-To: References: <63F017FC9B34084F8D216E83F9E0184D082BA97B@amsterdam.ucstaff.win.canberra.edu.au> <003401c9b97b$0ea32a60$2be97f20$@net.au> <001a01c9b984$02d588a0$088099e0$@net.au> <000901c9ba31$047155b0$0d540110$@net.au> Message-ID: <69DD5626-330A-426D-B3AC-D2B7C66421E3@bigpond.com> Hi Jane I really like the look of the iTouch or iPhone with Proloquo2Go. It isn't something Mac is ready for but having asked lots of questions and got lots of answers from the developers I think it something we will strive for. I have just posted my other thoughts around the next step on this on the Mac's blog so won't bore you with the details in here. One item I haven't really got my head around yet, but those using them seem to be really happy is the PODD (Pragmatic Organisation Dynamic Display) Book. I wonder if that is worth a look and might be more readily supported by the teaching staff not necessarily using picture symbols (doesn't sound like she needs that) but more as a way of organising the information. sorry I am not much more help. Cheers Gina Gina Wilson-Burns Tapitallee NSW 2540 ginawb at internode.on.net http://inkyed.wordpress.com -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu Apr 30 06:30:36 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Thu, 30 Apr 2009 23:30:36 +1000 Subject: FV: Communication Devices etc In-Reply-To: <000c01c9c98b$d5562700$80027500$@net.au> Message-ID: Jaquie is right, we got our Fujitsu for $1000 with warranties etc. It is ok for Mac because many of the applications he will use initially are switching and we will likely plug it straight into a bit 32" screen for him here at home. And it is a fab size. Just working on a really good mounting system for it at the moment. The touch screen for Mac will be for specific applications where we want him to start learning that type of feel. I looked at the ToughBooks and liked them also, but figured I didn't need the extra weight just yet. Also, don't forget Darrell mentioned Asus (I think) were bringing out one of their webbooks in a tablet version sometime this year. If she doesn't need touchscreen because she is good at mouse pointing etc that might be a good option too. I assume it can still take external mouse and keyboard in a tablet form. Cheers Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1522 of my spam emails to date. The Professional version does not have this message. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu Apr 30 15:08:38 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 1 May 2009 06:08:38 +0800 Subject: FV: Communication Devices etc In-Reply-To: References: <000c01c9c98b$d5562700$80027500$@net.au> Message-ID: <001901c9c9e0$3854ab20$a8fe0160$@net.au> 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. -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu Apr 30 20:54:38 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 1 May 2009 13:54:38 +1000 Subject: FV: Communication Devices etc In-Reply-To: <001901c9c9e0$3854ab20$a8fe0160$@net.au> References: <000c01c9c98b$d5562700$80027500$@net.au> <001901c9c9e0$3854ab20$a8fe0160$@net.au> Message-ID: 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 $1000 with warranties etc. It is ok for Mac because many of the applications he will use initially are switching and we will likely plug it straight into a bit 32" screen for him here at home. And it is a fab size. Just working on a really good mounting system for it at the moment. The touch screen for Mac will be for specific applications where we want him to start learning that type of feel. I looked at the ToughBooks and liked them also, but figured I didn't need the extra weight just yet. Also, don't forget Darrell mentioned Asus (I think) were bringing out one of their webbooks in a tablet version sometime this year. If she doesn't need touchscreen because she is good at mouse pointing etc that might be a good option too. I assume it can still take external mouse and keyboard in a tablet form. Cheers Gina _____ I am using the Free version of SPAMfighter . We are a community of 6 million users fighting spam. SPAMfighter has removed 1522 of my spam emails to date. The Professional version does not have this message. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.12.11/2089 - Release Date: 04/30/09 17:53:00 -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu Apr 30 21:03:39 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 1 May 2009 14:03:39 +1000 Subject: FV: Communication Devices etc In-Reply-To: References: <000c01c9c98b$d5562700$80027500$@net.au> <001901c9c9e0$3854ab20$a8fe0160$@net.au> Message-ID: Hi Jane http://inkyed.wordpress.com Just another thought to throw into the mix... Read the post on the blog called 'iFuture' and see if it makes a little bit of sense. I saw a touch screen MP3 player today at Aldi reduced down to $69 with a built in voice recorder and, I think, a built in speaker. I nearly bought it to fiddle with. I am not sure if it takes a finger touch or stylus touch but will try and find out. Maybe that is a good cheap option for practicing with. Ha ha I also nearly bought a 'walking frame/zimmerframe' from Aldi ($150) to to see if that would mod up better for an around town seating system for Mac so he can reach tables etc when we are at coffee shops. If you hear of elderly people with walking frames being stalked by a mum and kid in a wheelchair on the South Coast... that will be us. Cheers Gina -------------- next part -------------- An HTML attachment was scrubbed... URL: From familyvoices at inpress.pledgonline.com Thu Apr 30 22:10:51 2009 From: familyvoices at inpress.pledgonline.com (Family Voices) Date: Fri, 1 May 2009 15:10:51 +1000 Subject: FV: Communication Devices etc In-Reply-To: References: <000c01c9c98b$d5562700$80027500$@net.au><001901c9c9e0$3854ab20$a8fe0160$@net.au> Message-ID: <2E1C66F2D60547B598A052949097B111@dell91> HI Gina It's meant to be. We are off shopping in the big smoke tomorrow and one of our favorite places is ALDI. Talk soon. 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 2:04 PM To: familyvoices at inpress.pledgonline.com Subject: Re: FV: Communication Devices etc Hi Jane http://inkyed.wordpress.com Just another thought to throw into the mix... Read the post on the blog called 'iFuture' and see if it makes a little bit of sense. I saw a touch screen MP3 player today at Aldi reduced down to $69 with a built in voice recorder and, I think, a built in speaker. I nearly bought it to fiddle with. I am not sure if it takes a finger touch or stylus touch but will try and find out. Maybe that is a good cheap option for practicing with. Ha ha I also nearly bought a 'walking frame/zimmerframe' from Aldi ($150) to to see if that would mod up better for an around town seating system for Mac so he can reach tables etc when we are at coffee shops. If you hear of elderly people with walking frames being stalked by a mum and kid in a wheelchair on the South Coast... that will be us. Cheers Gina 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: