From familyvoices at inpress.pledgonline.com  Mon Jun  1 01:37:42 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 1 Jun 2009 18:37:42 +1000
Subject: FV: techno information
In-Reply-To: <001f01c9e0ec$96296a10$c27c3e30$@com>
References: <000f01c9dc58$47148650$c600a8c0@ANITA><A301392811DD4BDA8E6B17150A879123@D8XYGK1S><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au><65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au><AB5829E3D36F4964B3126F09371CAE64@SWEENEYDESKTOP><172F386E13044A428262A61380719B82DA02B0@jcmail>	<1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com><1918AFBC616E4B80B13E4F5D2943796C@dell91>
	<001f01c9e0ec$96296a10$c27c3e30$@com>
Message-ID: <55F2F2E5867848349F430013C155CA68@dell91>


Hello all

Can anyone tell me how I download off two itunes sites?  I have registered
Sarah's ipod (I think) to a I tunes site and my son has a itunes as well.
When I go to his and download his music it wipes out the stuff I have set up
on other.

Still haven't worked out proloque2go program.

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: Saturday, May 30, 2009 4:05 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Facilitated communicaton

It would do this and sort them but you have to change the header
(subject) of each positing to keep the thread the same.

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Friday, 29 May 2009 7:35 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Facilitated communicaton

 

Hi all

 

Brenda I have just come in have not really caught up with the thread but
am also interested in the conversations re FC.  I have to go away this
weekend, away from family voices  I am now printing off madly to show
some of the wonderful words of wisdom.

 

Right now I have a bit of headache so bit fuzzy but I have a thought in
my head that we are not tracking the conversations so well.  Is there
anyone out there with out a fuzzy head who can think of a simple way to
have threads in line???

Gina I have done the rule thing which is great another thing you have
taught me but could we do something like that with subjects of
conversations.

 

Family voices is one of the most powerful things in my world at the
moment, the sharing, knowledge, understanding is priceless.

Hug to all

 

Ps Hearing what you are saying Meg.  Was the house offer your new one or
old one.  Keep riding that rollercoaster girlfriend and hang on!!!

 

Jane Warner/Hudson

 

07 46714737

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Thursday, May 28, 2009 11:26 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

Hallo everyone,

 

I am a parent of a son who had a head injury many years ago and did not
come up through the child raising times and so I find your conversation
very enlightening.  I now have a problem. I am travelling in Canada,
using other people's computers, and wanted to forward the conversations
about Facilitated Communication to someone I met this week. However,
somehow I lost it. Would someone please forward those particular
conversations to me again so that I may send them on to her.

 

Regards,

 

Brenda

On Wed, May 27, 2009 at 8:10 PM, Family Voices
<familyvoices at inpress.pledgonline.com> wrote:

Another aspect of this we have faced is the absolutely IMPLICIT
'dependence learning' that is done through the very act of having
support workers. This is so deep in Matthew, and I feel quite certain at
this stage that this is an inherent aspect of the 'support worker'
model. Matthew turns to the person he is with and puts his hand to his
mouth (a morph of the drink/eat sign). This sign is a decision-making
sign and one that he initiates. It's fabulous that he initiates it
(decision-making in practice) but it quickly becomes a handing-over of
power (that he also initiates). It's also the fact that he does it in
the first place. Depending on the context, it variously means

 

 - tell me what is happening next

 - where are we going

 - I want something

 - who is coming after you bugger off (and are they going to be more
exciting that you my boring sister?!)

 

As you can see, depending on how you respond you can very easily become
the locus of control.

 

Why doesn't Matthew make a decision  - eg I want a drink - a go initiate
it? He's capable of this with assistance (this was meant as a
rhetorical/theoretical question). Instead he's learned so subtely and
powerfully over the years that the people who come in to his home are
responsible for this.

 

I'm using this as an example, not really looking for suggestions here
about others ways Matthew could communicate - we're really working on
this.

 

I think what I wanted to raise are actually issues around involvement of
paid people/unpaid people - I have seen this as another topic of
discussion here

 

So much of what families/individuals are conditioned around is the need
for paid support. Families (including ours), leap to it. However we
baulk (including ours), are fearful, worried, don't think it could be
possible etc around the unpaid stuff. We're taught (professional gift
model) that this is what is needed. I look at the self-managed community
participation options in NSW for example, where the work of families
seems very quickly to be around hiring support workers to assist the
young person in their post-school pursuits. It becomes like a vicious
cycle - the more we get caught up in managing the paid system the easier
it is to stay away from the (harder) work of the unpaid stuff. 

 

I have found in our accommodation agreement/arrangement with Matthew's
service provider that we too get driven by this. His budget is there to
use to hire support workers isn't it? 

 

It was therefore very interesting to hear Bruce Uditsky from Alberta,
Canada talk at Family Advocacy conference a couple of years ago about
this - their response has been to work on a number of projects that seek
to systemically develop more natural supports. For example their
partnership with Rotary where support on the job is built through
co-workers.

 

My example above is to talk about the potentially powerful impact of
this on people and their decision-making capacity. There are many things
we can do to help put power back into Matthew's hands, but many of these
are really just fiddling, cos they don't get at the root, which is the
very presence of the person whose job it is 'to help' (no matter how
empowering they are in the practice of this role).

 

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices

Sent: Wednesday, 27 May 2009 9:51 PM 


To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

The response we are accustomed to is "I don't know" when she absolutely
does know.  I think this comes from a place of wanting to please, not
wanting to be to told no and also wanting to get the answer right.
Depending on the complexity of the question we now give her ridiculous
options like cat food on toast to push her to articulate her choice or
reframing the question/breaking it down in sequential order to assist
understanding and then decision making.  We are also very aware that if
Jos makes a clear choice that we honor that (as much as we can,
education about good food choices or bed times if very tired etc) even
if it really puts us out otherwise her choice making is really
redundant, leading to more I don't know.  The other aspect is that we
know her well and understand her reluctance to make decisions however if
she were in a service world it would simply move on and make decisions
on her behalf that suited the service not her as a person.  We are
really keen to encourage her independent decision making as she will
need it in the future to maintain her personal independence and protect
her form being, excuse me, fucked around.  It's interesting that what is
a big ask for Jos would be just a natural occurrence for the other kids.
Todd and I are the moderators of this and we try to always be mindful
that our power over her life is much more profound in good ways and also
in not so good if were not careful to keep her interests at the
forefront of our minds.

 

Megs

 

Offer on house accepted, meeting with new school held.still thinking,
geriatric dog survived kennel experience (just), eldest child home from
England tomorrow, middle child has new work placement at child care
centre, youngest child 15 on Friday, just like everyone else ...busy,
and it's now winter YUCK !!!!!

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Tuesday, 26 May 2009 9:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

This is all so true...we all fill in the gaps of what we hear with our
own assumptions. We have a terrific service dude here in Perth who works
with the vela families who always reminds us that everyone's default
answer is always 'no'...until we have enough information.

 

One of eli's friends years ago used to routinely refuse to sleepover. I
assumed, in my wounded heart maternal fashion, for about a year that he
said no because he didn't really want to be around eli that much because
he was too weird. When i got around to asking him, he said...i'm
planning to live with eli when i move out of home but i don't think i am
ready to look after him all by myself yet. This young man was 13`at the
time, and for some reason he had assumed that a sleepover meant me and
Darryl wouldn't be here! We've had many sleepovers since and even now, 4
years later, some. Weekends liam almost lives here.

 

One strategy we've been using with one family is to build up an image of
adult life using favourite movies and tv shows. We have a young woman at
present with some challenges around adult behaviour, and are using her
favourite tv series 'Friends' to help her to identify adult vs childish
ways of being. So far it has been very successful. I think this process
of developing an adult identity is comlex for all of us.

 

We've had some awesome help with this from the international men's group
Mankind Project who eli is in the process of joining. I recommend them
from what i have seen so far to anyone with sons who are transitioning
into an adult male identity, but they have been profound and magnificent
in their welcome and inclusion of eli so far. Check out the website:

 

http://www.mkp.org/ 

 

Jaquie

 

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:31 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

That's really interesting Jill and has really made me think! Quite a
ground breaking thing - so simple yet so easily missed. This has really
made me think about my language and how we assume so much in our
conversations in life

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:49 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

Hi Jill, Interesting that the wording was the hold back. I did ask
Lauren if she was lonely and was our home too big for her to manage. But
she just looked at me vaguely and said no. Maybe I should word it
differently. I don't want her to feel she HAS to move away from her
security either. It might take years for us to get to a place where she
lives independently of us, but I feel we have started her thinking she
can do it.

When are you going to South America Jill?

Maureen

	----- Original Message ----- 

	From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com>  

	To: familyvoices at inpress.pledgonline.com 

	Sent: Monday, May 25, 2009 11:37 AM

	Subject: Re: FV: What is inclusion?

	 

	Hi Maureen 

	Great news about Lauren's 'holiday'!  I can relate to it so well
as it was the same for me with Ben when I returned from Canada.    Apart
from his solo experience whilst I was in Canada, I eventually worked out
what was adding to his concern re living independently.  I used to say
to him "wouldn't you like to live by yourself?" or something similar and
just lately twigged that he was taking this literally and thinking that
he would be just in the house by himself with nothing else happening!
When I thought to add that he would still go to work, go out with
friends, visit me etc, his whole attitude changed.  Silly me, thought he
was a mind reader!  Ben has now agreed to having a look at some places
for himself, so we will gradually do some open inspections.  More
holidays on the horizon for you!

	Regards

	Jill

	 

	 

	Hello everyone,

	Life has been busy here and I have been reading all the
contributions and not participating. Just reading..

	"Moving Mum"can be as stressful as thinking about moving our
young ones into places of their own. As I have a 91 y.o. Mum who lives
in an retirement apartment and is very independent, but she can't drive
or attend medical appointments without some assistance and so I (and
others) are always there for her. We are a huge family, and we love
sharing the responsibility of Mum, but for others like Anita, who are
"IT" - the problems can't be shared - there is a huge responsibility.

	There is such a close parallel between disability and aged care.
I often see the same issues arise between Mum and Lauren. Age is not the
barrier!

	 

	My good story for the day is..

	Murdoch and I went to Hobart for three nights of respite and
golf.. We ate too much and drank too much and went to the casino and the
horse track and generally enjoyed ourselves.

	All this was possible because we "bit the bullet"and left Lauren
at home - ALONE!!

	I had prepared a few meals in advance. She ordered a Pizza to
share with a friend who came over and stayed on Saturday night. They
took themselves out to brunch on Sunday morning and she managed her life
and recreation very well without us.. We are delighted to tell you we
are

	very excited about her independence, but more so, she was so
delighted to see us!!

	 

	Aren't we lucky? To be greeted so lovingly and warmly when we
drove in the garage and her little laughing face was at the door. My
other kids never greet me so welcomingly! She really loves us..That is
so nice. It is so evident even though she just can't bring herself to
mouth the words"I love you Mum and Dad"- We have blessed evidence and
that is so nice for us!

	 

	I hope you are all well

	Maureen

	 

		----- Original Message -----

		From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com> 

		To: familyvoices at inpress.pledgonline.com

		Sent: Sunday, May 24, 2009 8:13 PM

		Subject: Re: FV: What is inclusion?

		 

		Thanks Jaquie . . . I appreciate your thoughts  - I'm
off on a holiday for two weeks so hopefully I'll come back with a
peaceful and clearer mind!

		 

		Cheers!

		J

		Anita O'Brien

		6 Bogong Court

		Doncaster East 3109

		Ph: 03 9841 8492

		Mobile: 0416 064 045

		email: anita.obrien at optusnet.com.au
<mailto:anita.obrien at optusnet.com.au> 

			-----Original Message-----
			From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
			Sent: Sunday, 24 May 2009 5:28 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hey Anita

			I just went through this myself.

			I don't really have any sage advice, other than
to say that the microboard model has been extended in North America to
successfully cover situations like this one..ie so folks can be
supported at home. That probably doesn't help you directly as the model
is still so much in development, but is there a way you could use the
circle of friends idea to provide support to your mum in the new
location....these issues we face with our kids are the same we all face
at the times we most need support. Even if your mum needs to live in the
ILU or somewhere with more supported, person centred planning can still
help to make the service provision and her life as close as possible to
what she wants and needs. Also Essential Lifestyle Planning is really
good in this situation.

			I feel for you....it seems a cruel thing that us
parents seem to commonly have to deal with our kids and our parents
transitions at the same time.

			Let me know when you have downloaded Skype!

			Jaquie

			From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
			Sent: Thursday, 21 May 2009 2:29 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hi everyone,

			Loved the Kathie Snow statement AnitaS!

			Great story about Dan & Jack, Jo, of what can
happen out there in the community, how Dan was the connector!  These
experiences do keep you going.

			Inclusion for the elderly - don't always want
it.

			I have been spending much time caring for my
88-yr old mother in law, who has shifted unwillingly to an independent
living unit in a retirement village.  She needs quite a lot of support
and we have some in place, but she really needs hostel care or nursing
home.  We tried to make the transition easier for her from home to ILU.
It would have been great for her to stay in her own home and we have
been supporting her to do so for nine years plus, but her vulnerability
is such that we had no choice.     Quite a few people she knows in the
village but up to now she doesn't seem to want to mingle anymore than
she has to.  This situation seems to go against all I believe and work
towards for Warren;  Her choice would be her family home - & hide away.
On top of this we have had a mountain of cleaning up to do to get her
house ready for sale.  If anyone has some sage advice I'm happy to
listen.  

			Thinking about getting on Skype myself - let you
know how I go Jo.

			Warm wishes to everyone!

			xo

			AnitaO

				-----Original Message-----
				From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
				Sent: Wednesday, 20 May 2009 10:51 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Wow, I'm worn out thinking about all
that travelling - I hope it'll be for a few weeks.  Yes, it is a small
world and what a great opportunity to catch up with Bruce to maybe get
his reflections.  Go Girl - congratulations Rachel on getting the gig -
I looove Rock n Roll (am I on the right track). 

				I'll get dad to run a copy of the DVD
for you (are you reading this dad?) - not a heap on it but enough to
enjoy and bring back those memories.

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Wednesday, 20 May 2009 7:05 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hello Jo Good to hear you and remember
our time at the Ho Down and of course other moments, How did the film
come out. It would be good to see.
				We are off to Dublin in August and now
not only will Rachel  present a paper she is  being invited to be part
of the demonstration Rock and Roll team. Rather her than me but she
seems happy with the task. there are nine other from the Down Syndrome
group who have been involved for a long time so she has a bit of work to
do. Still they seemed keen to have her after they asked her to go for a
audition. She will also be performing in her two woman show in London so
she is going to be busy. I am looking forward to catching up with
Bridget as she son will both be there, Actually it will be great because
I see from the program that Bruce will also be attending. We might just
have our own little meeting and hear from him how he thought our visit
went. It is a small world really isn't it. We will spend some time with
my sister and her family england and then go to South Africa on the way
home to see my Brothers family.
				You take care Miriam

				
________________________________


				To: familyvoices at inpress.pledgonline.com
				Date: Wed, 20 May 2009 08:10:02 +0800
				From:
familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Thanks Miriam, it's lovely to hear from
you.  When are you off on your trip - must be coming up fast now.  Hope
all is well with you and the family,

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Monday, 18 May 2009 7:46 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hi Jo I loved your happy weekend story.
and the glimpse of you in your home. I hope the education stuff gets
better for you, sadly it is such a long hard journey. You take care my
warmest wishes  Miriam 
				 
				> To:
familyvoices at inpress.pledgonline.com
				> Date: Sun, 17 May 2009 18:48:14 +0800
				> From:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Everyone, 
				> 
				> It is 5pm West Aussie time and I have
been sitting here with a loooovely
				> glass of Cab/Sav catching up on the
conversation on FV learning from one of
				> my favourite sources. 
				> 
				> I am feeling pleasantly tired after
being away to a Velor Microboard Weekend
				> at Fairbridge (just north of Pinjarra)
with another amazing group of people
				> from all over the state learning more
about inclusion and how to invite
				> others to be an integral part of our
sons life. While I was learning this
				> stuff Dan was out having fun on the
flying fox, abseiling, bush walking etc
				> supported by new friends.....
				> 
				> Would like to share this story from
the weekend, Dan and a young man, Jack
				> connected with one another on
Saturday, I only discovered the connection
				> this morning when Jack walked by at
breakfast and I saw Dan's arm shoot up
				> to give him a 'high five', Jack
stopped, said good morning, how are you
				> mate, had a bit more of a chat and
went off to have brekky. The abseiling
				> was happening after breakfast and
after some discussion with the Coordinator
				> she approached Jack to ask if he would
take Dan abseiling which he readily
				> agreed to. When lunch time came
around, Dan arrived back at the hall with
				> Steve, minus Jack - I was wondering if
everything went ok and decided to
				> follow up with him when I could. 15
minutes later he came in and sat down,
				> I thanked him for helping Dan out and
he said "it's me that will be thanking
				> Dan", he explained that he had never
abseiled before so prior to taking Dan
				> up he did a dummy run on his own, then
he went up and down with Dan. After
				> everyone had had their turn the
instructor offered Jack a weekend job, Jack
				> said he didn't know much about
abseiling and the response was "if you can
				> support someone the way you did with
Dan, talking to him all the way up and
				> down, helping him out where he needed,
you know everything you need to
				> know". Jack was stoked (he's 16) and I
was in awe of him being so
				> appreciative of Dan who helped him get
the job. One day I'll stop being
				> surprised but right now I still get
caught out with how there are others who
				> are so appreciative of our kids. Just
wanted to share a warm and fuzzy -
				> they help me keep going with the other
hard slog stuff we have to face -
				> thank goodness for these little gems.
				> 
				> I have some education stuff happening
(negative) but don't want to go into
				> it just now after my enjoyable weekend
so will ask for some comments at
				> another time when I'm ready to tackle
it.......wish it could be never!
				> Jo
				> 
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, 17 May 2009 2:39 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> HI Gina
				> Just been skyping with Anita. Wow is
that scary I think the rule should be
				> only head for camera.
				> 
				> I have also just gone to itunes and
downloaded away the podcasts?? What are
				> they?
				> 
				> Is anyone interested in skypeing?
				> Cheers Jane
				> 
				> 
				> Jane Warner/Hudson
				> 
				> 07 46714737
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, May 17, 2009 1:32 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Jane
				> 
				> Bearing in mind I haven't got P2Go at
this stage but this is only as I
				> understand it...
				> 
				> Q/ With the prolquo when I go into
"about me" Can I put in stuff where
				> it
				> says "I go to the .....school?" ie
Goondiwindi. If it is yes I will
				> then
				> work out how, I just don't want to be
trying to work something out that
				> I
				> cant do.
				> 
				> I believe you can add in your own
words etc, you might have to fiddle
				> with the spelling, punctuation etc of
Goondawindi to get the voice to
				> say it well enough for you to be happy
with, ie it might need some
				> phonetic spelling, hyphens etc to work
it out. In time you will work
				> out how to spell things to have the
'real voice' pronounce it well
				> enough.
				> 
				> Q/Which manual or directions do you
think are the simplest for
				> programming?
				> 
				> Have you joined the P2Go group - there
are some great parents who have
				> been beta testing it on that group and
they are very keen to help out.
				> I posted the link a while back, but
can resend if you need it. These
				> are people actually using it for their
kids now, so would be great to
				> post your specific questions to them.
The developers are very hands on
				> too.
				> 
				> 
				> Q/ Do you think it would be worth my
while to get a Iphone for me? (I
				> saw
				> one on ebay that looked ok), Sarah
have the Ipod so that I can learn to
				> use
				> it while she is. At some stage I would
like her to use the phone just
				> not
				> sure if this is the right tool. Ie my
thought for her was maybe a phone
				> with video connection to me so she can
learn mum rings, I see her face
				> and
				> from their we learn answering and talk
back.
				> 
				> We haven't got the iPhone yet, but
this was our plan... Shawn is off
				> contract with his phone at the moment
having changed jobs and now for
				> the first time in his working career
not provided a phone (shame about
				> that). So he was going to lock into a
$49 or $59 capped plan to curb
				> his costs each month. Optus are
currently offering iPhone plans with a
				> 8gig phone at this price so we believe
we could sign up to one of those
				> plans, bring his number across to that
plan, then move the sim card to
				> his Samsung phone an then just use the
iPhone for Mac without a sim card
				> (or buy a cheap prepaid plan if we
felt it was good as an emergency
				> phone). At least that way I could
start developing options for its use,
				> start storing things I would normally
store on a stepped switch
				> communicator and so on.
				> 
				> I still need to find a way to switch
adapt it, no-one has worked that
				> out yet - but I will keep trying. 
				> 
				> You would just have to check out the
costs/capabilities of video calls
				> if that was a goal - I don't know much
about that. Maybe skype is
				> available to use via the internet
connections rather than phone calls -
				> not sure on that one.
				> 
				> 
				> In saying all this she is very good
with the ipod I put hi five and
				> wiggles
				> on yesterday and it is a hit.
				> 
				> There are also some great free PIXAR
short films on iTunes you can
				> download - Mac loves them. Also check
out the podcasts that are out
				> there. We found heaps of stories for
Mac on podcasts (all free). Mac
				> has a very eclectic selection on his
ipod. Jason Mraz is a big hit, he
				> likes to sing along, but he also likes
some albums called 'Little
				> Voices' which is kids singing more
contemporary and classic songs. He
				> seems to have ended his Tom Jones
phase (now that the 'beer ad' is off
				> tv), still partial to some Kiss from
time to time. He is a funny kid
				> really - he would be happy to have
some big political speeches on there,
				> loves a big political statement on the
news, he readily 'glaarrs' along
				> with the speaker - we are not sure
whether he is 'for or agin' Mr Rudd
				> yet, but he certainly pipes up
everytime Kevvy is banging on about stuff
				> on tv or radio.
				> 
				> I am also going to see what I can
learn about the Database program Bento
				> which can be used on the iPhone and
see if a PODD style system could be
				> converted into that format. Just
trying to find some workshops on PODD
				> systems somewhere in the country at
the moment so I can learn more.
				> 
				> Sorry more questions, where is the
best place to get easy step by step
				> instructions to use ipod ie move
programs on front page.
				> 
				> Check out their website at
http://www.proloquo2go.com/
				> <http://www.proloquo2go.com/> 
				> 
				> 
				> Can I download a dvd to ipod direct or
does everything have to go thru
				> itunes?
				> 
				> I think you can just convert a DVD
into ipod formats - there would be
				> software to do that depending on
whether you are on PC or Mac. Some
				> might be freeware, some cheap, some
expensive. Again, since I haven't
				> got the touch yet I can't be sure. 
				> 
				> Thanks Gina. You are such a
inspirtation, I would love to get you to do
				> a
				> workshop for want of a better word in
Goondiwindi. The young families I
				> work with could learn so much from
you.
				> Anytime :-)
				> 
				> Just a thought which I am sure you
have covered, when you talk with the
				> school do you have someone beside you?
> 
				> I have my husband sitting beside me
for all these meetings. I would not
				> go in there alone for love nor money.
We sometimes don't think it is
				> fair on those we meet with. Shawn and
I have been together now for 21
				> years and know exactly where one
another sits on issues so we can play
				> the "good cop/bad cop" roles pretty
well, and where we know it is
				> unfair, is that we switch mid meeting
if it is needed. Because Shawn
				> has been doing so much study on
disability representation in the Media
				> etc he is great because he can just
spout stuff, but also because he is
				> a journalist he is trained to
question, so he turns their questions
				> round back at them - so we know we
don't really play fair. We also don'
				> t go in for all the 'guilt' stuff we
are meant to - guilt is soooo
				> over-rated :-). For example there are
kids at the school who have been
				> denied access to other schools because
they have 'behavioural and/or
				> emotional type issues' (I know,
shouldn't happen, shouldn't be denied
				> access anywhere, but it does) so our
school does take them with open
				> arms, but these families are then
sooooo grateful their kid has been
				> accepted they are not going to risk
making waves and subsequently they
				> have been forced into this position of
having to feel grateful and/or
				> disempowered by the system. So, when
you don't do the guilt thing, I
				> guess it becomes a bit confronting for
'the system'.
				> 
				> Hope it helps
				> 
				> Feel free to contact me anytime if you
think I can be useful. Mac's
				> birthday is in June - he might get his
iPhone then. So excessive
				> providing such a thing to a 6yo but I
honestly think it has the
				> potential to be such a fab tool for
him I will just have to cope with
				> being an over indulgent parent (guilt
free of course).
				> 
				> Gina
				> 
				> 
				> 
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				> 
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From familyvoices at inpress.pledgonline.com  Mon Jun  1 01:45:15 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 1 Jun 2009 18:45:15 +1000
Subject: FV: techno information
In-Reply-To: <55F2F2E5867848349F430013C155CA68@dell91>
Message-ID: <7sroog$bnqo07@ipmail05.adl2.internode.on.net>

HI Jane
I will have a fiddle with ours to see what we are doing differently and if I
can work anything out.

We have Shawn's computer set up for his, Mac's, Cousin Alex, Cousin Lucy and
Friend Jordan's ipods but think at the moment we get everyone's music on all
of them unless we pick and choose specific playlists to sync.

Maybe it needs to be done as a manual copy of playlists rather than a sync -
I'll get back to you.
Gina


-----Original Message-----
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: techno information


Hello all

Can anyone tell me how I download off two itunes sites?  I have registered
Sarah's ipod (I think) to a I tunes site and my son has a itunes as well.
When I go to his and download his music it wipes out the stuff I have set up
on other.

Still haven't worked out proloque2go program.

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: Saturday, May 30, 2009 4:05 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Facilitated communicaton

It would do this and sort them but you have to change the header
(subject) of each positing to keep the thread the same.

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Friday, 29 May 2009 7:35 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Facilitated communicaton

 

Hi all

 

Brenda I have just come in have not really caught up with the thread but
am also interested in the conversations re FC.  I have to go away this
weekend, away from family voices  I am now printing off madly to show
some of the wonderful words of wisdom.

 

Right now I have a bit of headache so bit fuzzy but I have a thought in
my head that we are not tracking the conversations so well.  Is there
anyone out there with out a fuzzy head who can think of a simple way to
have threads in line???

Gina I have done the rule thing which is great another thing you have
taught me but could we do something like that with subjects of
conversations.

 

Family voices is one of the most powerful things in my world at the
moment, the sharing, knowledge, understanding is priceless.

Hug to all

 

Ps Hearing what you are saying Meg.  Was the house offer your new one or
old one.  Keep riding that rollercoaster girlfriend and hang on!!!

 

Jane Warner/Hudson

 

07 46714737

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Thursday, May 28, 2009 11:26 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

Hallo everyone,

 

I am a parent of a son who had a head injury many years ago and did not
come up through the child raising times and so I find your conversation
very enlightening.  I now have a problem. I am travelling in Canada,
using other people's computers, and wanted to forward the conversations
about Facilitated Communication to someone I met this week. However,
somehow I lost it. Would someone please forward those particular
conversations to me again so that I may send them on to her.

 

Regards,

 

Brenda

On Wed, May 27, 2009 at 8:10 PM, Family Voices
<familyvoices at inpress.pledgonline.com> wrote:

Another aspect of this we have faced is the absolutely IMPLICIT
'dependence learning' that is done through the very act of having
support workers. This is so deep in Matthew, and I feel quite certain at
this stage that this is an inherent aspect of the 'support worker'
model. Matthew turns to the person he is with and puts his hand to his
mouth (a morph of the drink/eat sign). This sign is a decision-making
sign and one that he initiates. It's fabulous that he initiates it
(decision-making in practice) but it quickly becomes a handing-over of
power (that he also initiates). It's also the fact that he does it in
the first place. Depending on the context, it variously means

 

 - tell me what is happening next

 - where are we going

 - I want something

 - who is coming after you bugger off (and are they going to be more
exciting that you my boring sister?!)

 

As you can see, depending on how you respond you can very easily become
the locus of control.

 

Why doesn't Matthew make a decision  - eg I want a drink - a go initiate
it? He's capable of this with assistance (this was meant as a
rhetorical/theoretical question). Instead he's learned so subtely and
powerfully over the years that the people who come in to his home are
responsible for this.

 

I'm using this as an example, not really looking for suggestions here
about others ways Matthew could communicate - we're really working on
this.

 

I think what I wanted to raise are actually issues around involvement of
paid people/unpaid people - I have seen this as another topic of
discussion here

 

So much of what families/individuals are conditioned around is the need
for paid support. Families (including ours), leap to it. However we
baulk (including ours), are fearful, worried, don't think it could be
possible etc around the unpaid stuff. We're taught (professional gift
model) that this is what is needed. I look at the self-managed community
participation options in NSW for example, where the work of families
seems very quickly to be around hiring support workers to assist the
young person in their post-school pursuits. It becomes like a vicious
cycle - the more we get caught up in managing the paid system the easier
it is to stay away from the (harder) work of the unpaid stuff. 

 

I have found in our accommodation agreement/arrangement with Matthew's
service provider that we too get driven by this. His budget is there to
use to hire support workers isn't it? 

 

It was therefore very interesting to hear Bruce Uditsky from Alberta,
Canada talk at Family Advocacy conference a couple of years ago about
this - their response has been to work on a number of projects that seek
to systemically develop more natural supports. For example their
partnership with Rotary where support on the job is built through
co-workers.

 

My example above is to talk about the potentially powerful impact of
this on people and their decision-making capacity. There are many things
we can do to help put power back into Matthew's hands, but many of these
are really just fiddling, cos they don't get at the root, which is the
very presence of the person whose job it is 'to help' (no matter how
empowering they are in the practice of this role).

 

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices

Sent: Wednesday, 27 May 2009 9:51 PM 


To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

The response we are accustomed to is "I don't know" when she absolutely
does know.  I think this comes from a place of wanting to please, not
wanting to be to told no and also wanting to get the answer right.
Depending on the complexity of the question we now give her ridiculous
options like cat food on toast to push her to articulate her choice or
reframing the question/breaking it down in sequential order to assist
understanding and then decision making.  We are also very aware that if
Jos makes a clear choice that we honor that (as much as we can,
education about good food choices or bed times if very tired etc) even
if it really puts us out otherwise her choice making is really
redundant, leading to more I don't know.  The other aspect is that we
know her well and understand her reluctance to make decisions however if
she were in a service world it would simply move on and make decisions
on her behalf that suited the service not her as a person.  We are
really keen to encourage her independent decision making as she will
need it in the future to maintain her personal independence and protect
her form being, excuse me, fucked around.  It's interesting that what is
a big ask for Jos would be just a natural occurrence for the other kids.
Todd and I are the moderators of this and we try to always be mindful
that our power over her life is much more profound in good ways and also
in not so good if were not careful to keep her interests at the
forefront of our minds.

 

Megs

 

Offer on house accepted, meeting with new school held.still thinking,
geriatric dog survived kennel experience (just), eldest child home from
England tomorrow, middle child has new work placement at child care
centre, youngest child 15 on Friday, just like everyone else ...busy,
and it's now winter YUCK !!!!!

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Tuesday, 26 May 2009 9:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

This is all so true...we all fill in the gaps of what we hear with our
own assumptions. We have a terrific service dude here in Perth who works
with the vela families who always reminds us that everyone's default
answer is always 'no'...until we have enough information.

 

One of eli's friends years ago used to routinely refuse to sleepover. I
assumed, in my wounded heart maternal fashion, for about a year that he
said no because he didn't really want to be around eli that much because
he was too weird. When i got around to asking him, he said...i'm
planning to live with eli when i move out of home but i don't think i am
ready to look after him all by myself yet. This young man was 13`at the
time, and for some reason he had assumed that a sleepover meant me and
Darryl wouldn't be here! We've had many sleepovers since and even now, 4
years later, some. Weekends liam almost lives here.

 

One strategy we've been using with one family is to build up an image of
adult life using favourite movies and tv shows. We have a young woman at
present with some challenges around adult behaviour, and are using her
favourite tv series 'Friends' to help her to identify adult vs childish
ways of being. So far it has been very successful. I think this process
of developing an adult identity is comlex for all of us.

 

We've had some awesome help with this from the international men's group
Mankind Project who eli is in the process of joining. I recommend them
from what i have seen so far to anyone with sons who are transitioning
into an adult male identity, but they have been profound and magnificent
in their welcome and inclusion of eli so far. Check out the website:

 

http://www.mkp.org/ 

 

Jaquie

 

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:31 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

That's really interesting Jill and has really made me think! Quite a
ground breaking thing - so simple yet so easily missed. This has really
made me think about my language and how we assume so much in our
conversations in life

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:49 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

Hi Jill, Interesting that the wording was the hold back. I did ask
Lauren if she was lonely and was our home too big for her to manage. But
she just looked at me vaguely and said no. Maybe I should word it
differently. I don't want her to feel she HAS to move away from her
security either. It might take years for us to get to a place where she
lives independently of us, but I feel we have started her thinking she
can do it.

When are you going to South America Jill?

Maureen

	----- Original Message ----- 

	From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com>  

	To: familyvoices at inpress.pledgonline.com 

	Sent: Monday, May 25, 2009 11:37 AM

	Subject: Re: FV: What is inclusion?

	 

	Hi Maureen 

	Great news about Lauren's 'holiday'!  I can relate to it so well
as it was the same for me with Ben when I returned from Canada.    Apart
from his solo experience whilst I was in Canada, I eventually worked out
what was adding to his concern re living independently.  I used to say
to him "wouldn't you like to live by yourself?" or something similar and
just lately twigged that he was taking this literally and thinking that
he would be just in the house by himself with nothing else happening!
When I thought to add that he would still go to work, go out with
friends, visit me etc, his whole attitude changed.  Silly me, thought he
was a mind reader!  Ben has now agreed to having a look at some places
for himself, so we will gradually do some open inspections.  More
holidays on the horizon for you!

	Regards

	Jill

	 

	 

	Hello everyone,

	Life has been busy here and I have been reading all the
contributions and not participating. Just reading..

	"Moving Mum"can be as stressful as thinking about moving our
young ones into places of their own. As I have a 91 y.o. Mum who lives
in an retirement apartment and is very independent, but she can't drive
or attend medical appointments without some assistance and so I (and
others) are always there for her. We are a huge family, and we love
sharing the responsibility of Mum, but for others like Anita, who are
"IT" - the problems can't be shared - there is a huge responsibility.

	There is such a close parallel between disability and aged care.
I often see the same issues arise between Mum and Lauren. Age is not the
barrier!

	 

	My good story for the day is..

	Murdoch and I went to Hobart for three nights of respite and
golf.. We ate too much and drank too much and went to the casino and the
horse track and generally enjoyed ourselves.

	All this was possible because we "bit the bullet"and left Lauren
at home - ALONE!!

	I had prepared a few meals in advance. She ordered a Pizza to
share with a friend who came over and stayed on Saturday night. They
took themselves out to brunch on Sunday morning and she managed her life
and recreation very well without us.. We are delighted to tell you we
are

	very excited about her independence, but more so, she was so
delighted to see us!!

	 

	Aren't we lucky? To be greeted so lovingly and warmly when we
drove in the garage and her little laughing face was at the door. My
other kids never greet me so welcomingly! She really loves us..That is
so nice. It is so evident even though she just can't bring herself to
mouth the words"I love you Mum and Dad"- We have blessed evidence and
that is so nice for us!

	 

	I hope you are all well

	Maureen

	 

		----- Original Message -----

		From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com> 

		To: familyvoices at inpress.pledgonline.com

		Sent: Sunday, May 24, 2009 8:13 PM

		Subject: Re: FV: What is inclusion?

		 

		Thanks Jaquie . . . I appreciate your thoughts  - I'm
off on a holiday for two weeks so hopefully I'll come back with a
peaceful and clearer mind!

		 

		Cheers!

		J

		Anita O'Brien

		6 Bogong Court

		Doncaster East 3109

		Ph: 03 9841 8492

		Mobile: 0416 064 045

		email: anita.obrien at optusnet.com.au
<mailto:anita.obrien at optusnet.com.au> 

			-----Original Message-----
			From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
			Sent: Sunday, 24 May 2009 5:28 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hey Anita

			I just went through this myself.

			I don't really have any sage advice, other than
to say that the microboard model has been extended in North America to
successfully cover situations like this one..ie so folks can be
supported at home. That probably doesn't help you directly as the model
is still so much in development, but is there a way you could use the
circle of friends idea to provide support to your mum in the new
location....these issues we face with our kids are the same we all face
at the times we most need support. Even if your mum needs to live in the
ILU or somewhere with more supported, person centred planning can still
help to make the service provision and her life as close as possible to
what she wants and needs. Also Essential Lifestyle Planning is really
good in this situation.

			I feel for you....it seems a cruel thing that us
parents seem to commonly have to deal with our kids and our parents
transitions at the same time.

			Let me know when you have downloaded Skype!

			Jaquie

			From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
			Sent: Thursday, 21 May 2009 2:29 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hi everyone,

			Loved the Kathie Snow statement AnitaS!

			Great story about Dan & Jack, Jo, of what can
happen out there in the community, how Dan was the connector!  These
experiences do keep you going.

			Inclusion for the elderly - don't always want
it.

			I have been spending much time caring for my
88-yr old mother in law, who has shifted unwillingly to an independent
living unit in a retirement village.  She needs quite a lot of support
and we have some in place, but she really needs hostel care or nursing
home.  We tried to make the transition easier for her from home to ILU.
It would have been great for her to stay in her own home and we have
been supporting her to do so for nine years plus, but her vulnerability
is such that we had no choice.     Quite a few people she knows in the
village but up to now she doesn't seem to want to mingle anymore than
she has to.  This situation seems to go against all I believe and work
towards for Warren;  Her choice would be her family home - & hide away.
On top of this we have had a mountain of cleaning up to do to get her
house ready for sale.  If anyone has some sage advice I'm happy to
listen.  

			Thinking about getting on Skype myself - let you
know how I go Jo.

			Warm wishes to everyone!

			xo

			AnitaO

				-----Original Message-----
				From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
				Sent: Wednesday, 20 May 2009 10:51 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Wow, I'm worn out thinking about all
that travelling - I hope it'll be for a few weeks.  Yes, it is a small
world and what a great opportunity to catch up with Bruce to maybe get
his reflections.  Go Girl - congratulations Rachel on getting the gig -
I looove Rock n Roll (am I on the right track). 

				I'll get dad to run a copy of the DVD
for you (are you reading this dad?) - not a heap on it but enough to
enjoy and bring back those memories.

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Wednesday, 20 May 2009 7:05 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hello Jo Good to hear you and remember
our time at the Ho Down and of course other moments, How did the film
come out. It would be good to see.
				We are off to Dublin in August and now
not only will Rachel  present a paper she is  being invited to be part
of the demonstration Rock and Roll team. Rather her than me but she
seems happy with the task. there are nine other from the Down Syndrome
group who have been involved for a long time so she has a bit of work to
do. Still they seemed keen to have her after they asked her to go for a
audition. She will also be performing in her two woman show in London so
she is going to be busy. I am looking forward to catching up with
Bridget as she son will both be there, Actually it will be great because
I see from the program that Bruce will also be attending. We might just
have our own little meeting and hear from him how he thought our visit
went. It is a small world really isn't it. We will spend some time with
my sister and her family england and then go to South Africa on the way
home to see my Brothers family.
				You take care Miriam

				
________________________________


				To: familyvoices at inpress.pledgonline.com
				Date: Wed, 20 May 2009 08:10:02 +0800
				From:
familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Thanks Miriam, it's lovely to hear from
you.  When are you off on your trip - must be coming up fast now.  Hope
all is well with you and the family,

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Monday, 18 May 2009 7:46 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hi Jo I loved your happy weekend story.
and the glimpse of you in your home. I hope the education stuff gets
better for you, sadly it is such a long hard journey. You take care my
warmest wishes  Miriam 
				 
				> To:
familyvoices at inpress.pledgonline.com
				> Date: Sun, 17 May 2009 18:48:14 +0800
				> From:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Everyone, 
				> 
				> It is 5pm West Aussie time and I have
been sitting here with a loooovely
				> glass of Cab/Sav catching up on the
conversation on FV learning from one of
				> my favourite sources. 
				> 
				> I am feeling pleasantly tired after
being away to a Velor Microboard Weekend
				> at Fairbridge (just north of Pinjarra)
with another amazing group of people
				> from all over the state learning more
about inclusion and how to invite
				> others to be an integral part of our
sons life. While I was learning this
				> stuff Dan was out having fun on the
flying fox, abseiling, bush walking etc
				> supported by new friends.....
				> 
				> Would like to share this story from
the weekend, Dan and a young man, Jack
				> connected with one another on
Saturday, I only discovered the connection
				> this morning when Jack walked by at
breakfast and I saw Dan's arm shoot up
				> to give him a 'high five', Jack
stopped, said good morning, how are you
				> mate, had a bit more of a chat and
went off to have brekky. The abseiling
				> was happening after breakfast and
after some discussion with the Coordinator
				> she approached Jack to ask if he would
take Dan abseiling which he readily
				> agreed to. When lunch time came
around, Dan arrived back at the hall with
				> Steve, minus Jack - I was wondering if
everything went ok and decided to
				> follow up with him when I could. 15
minutes later he came in and sat down,
				> I thanked him for helping Dan out and
he said "it's me that will be thanking
				> Dan", he explained that he had never
abseiled before so prior to taking Dan
				> up he did a dummy run on his own, then
he went up and down with Dan. After
				> everyone had had their turn the
instructor offered Jack a weekend job, Jack
				> said he didn't know much about
abseiling and the response was "if you can
				> support someone the way you did with
Dan, talking to him all the way up and
				> down, helping him out where he needed,
you know everything you need to
				> know". Jack was stoked (he's 16) and I
was in awe of him being so
				> appreciative of Dan who helped him get
the job. One day I'll stop being
				> surprised but right now I still get
caught out with how there are others who
				> are so appreciative of our kids. Just
wanted to share a warm and fuzzy -
				> they help me keep going with the other
hard slog stuff we have to face -
				> thank goodness for these little gems.
				> 
				> I have some education stuff happening
(negative) but don't want to go into
				> it just now after my enjoyable weekend
so will ask for some comments at
				> another time when I'm ready to tackle
it.......wish it could be never!
				> Jo
				> 
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, 17 May 2009 2:39 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> HI Gina
				> Just been skyping with Anita. Wow is
that scary I think the rule should be
				> only head for camera.
				> 
				> I have also just gone to itunes and
downloaded away the podcasts?? What are
				> they?
				> 
				> Is anyone interested in skypeing?
				> Cheers Jane
				> 
				> 
				> Jane Warner/Hudson
				> 
				> 07 46714737
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, May 17, 2009 1:32 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Jane
				> 
				> Bearing in mind I haven't got P2Go at
this stage but this is only as I
				> understand it...
				> 
				> Q/ With the prolquo when I go into
"about me" Can I put in stuff where
				> it
				> says "I go to the .....school?" ie
Goondiwindi. If it is yes I will
				> then
				> work out how, I just don't want to be
trying to work something out that
				> I
				> cant do.
				> 
				> I believe you can add in your own
words etc, you might have to fiddle
				> with the spelling, punctuation etc of
Goondawindi to get the voice to
				> say it well enough for you to be happy
with, ie it might need some
				> phonetic spelling, hyphens etc to work
it out. In time you will work
				> out how to spell things to have the
'real voice' pronounce it well
				> enough.
				> 
				> Q/Which manual or directions do you
think are the simplest for
				> programming?
				> 
				> Have you joined the P2Go group - there
are some great parents who have
				> been beta testing it on that group and
they are very keen to help out.
				> I posted the link a while back, but
can resend if you need it. These
				> are people actually using it for their
kids now, so would be great to
				> post your specific questions to them.
The developers are very hands on
				> too.
				> 
				> 
				> Q/ Do you think it would be worth my
while to get a Iphone for me? (I
				> saw
				> one on ebay that looked ok), Sarah
have the Ipod so that I can learn to
				> use
				> it while she is. At some stage I would
like her to use the phone just
				> not
				> sure if this is the right tool. Ie my
thought for her was maybe a phone
				> with video connection to me so she can
learn mum rings, I see her face
				> and
				> from their we learn answering and talk
back.
				> 
				> We haven't got the iPhone yet, but
this was our plan... Shawn is off
				> contract with his phone at the moment
having changed jobs and now for
				> the first time in his working career
not provided a phone (shame about
				> that). So he was going to lock into a
$49 or $59 capped plan to curb
				> his costs each month. Optus are
currently offering iPhone plans with a
				> 8gig phone at this price so we believe
we could sign up to one of those
				> plans, bring his number across to that
plan, then move the sim card to
				> his Samsung phone an then just use the
iPhone for Mac without a sim card
				> (or buy a cheap prepaid plan if we
felt it was good as an emergency
				> phone). At least that way I could
start developing options for its use,
				> start storing things I would normally
store on a stepped switch
				> communicator and so on.
				> 
				> I still need to find a way to switch
adapt it, no-one has worked that
				> out yet - but I will keep trying. 
				> 
				> You would just have to check out the
costs/capabilities of video calls
				> if that was a goal - I don't know much
about that. Maybe skype is
				> available to use via the internet
connections rather than phone calls -
				> not sure on that one.
				> 
				> 
				> In saying all this she is very good
with the ipod I put hi five and
				> wiggles
				> on yesterday and it is a hit.
				> 
				> There are also some great free PIXAR
short films on iTunes you can
				> download - Mac loves them. Also check
out the podcasts that are out
				> there. We found heaps of stories for
Mac on podcasts (all free). Mac
				> has a very eclectic selection on his
ipod. Jason Mraz is a big hit, he
				> likes to sing along, but he also likes
some albums called 'Little
				> Voices' which is kids singing more
contemporary and classic songs. He
				> seems to have ended his Tom Jones
phase (now that the 'beer ad' is off
				> tv), still partial to some Kiss from
time to time. He is a funny kid
				> really - he would be happy to have
some big political speeches on there,
				> loves a big political statement on the
news, he readily 'glaarrs' along
				> with the speaker - we are not sure
whether he is 'for or agin' Mr Rudd
				> yet, but he certainly pipes up
everytime Kevvy is banging on about stuff
				> on tv or radio.
				> 
				> I am also going to see what I can
learn about the Database program Bento
				> which can be used on the iPhone and
see if a PODD style system could be
				> converted into that format. Just
trying to find some workshops on PODD
				> systems somewhere in the country at
the moment so I can learn more.
				> 
				> Sorry more questions, where is the
best place to get easy step by step
				> instructions to use ipod ie move
programs on front page.
				> 
				> Check out their website at
http://www.proloquo2go.com/
				> <http://www.proloquo2go.com/> 
				> 
				> 
				> Can I download a dvd to ipod direct or
does everything have to go thru
				> itunes?
				> 
				> I think you can just convert a DVD
into ipod formats - there would be
				> software to do that depending on
whether you are on PC or Mac. Some
				> might be freeware, some cheap, some
expensive. Again, since I haven't
				> got the touch yet I can't be sure. 
				> 
				> Thanks Gina. You are such a
inspirtation, I would love to get you to do
				> a
				> workshop for want of a better word in
Goondiwindi. The young families I
				> work with could learn so much from
you.
				> Anytime :-)
				> 
				> Just a thought which I am sure you
have covered, when you talk with the
				> school do you have someone beside you?
> 
				> I have my husband sitting beside me
for all these meetings. I would not
				> go in there alone for love nor money.
We sometimes don't think it is
				> fair on those we meet with. Shawn and
I have been together now for 21
				> years and know exactly where one
another sits on issues so we can play
				> the "good cop/bad cop" roles pretty
well, and where we know it is
				> unfair, is that we switch mid meeting
if it is needed. Because Shawn
				> has been doing so much study on
disability representation in the Media
				> etc he is great because he can just
spout stuff, but also because he is
				> a journalist he is trained to
question, so he turns their questions
				> round back at them - so we know we
don't really play fair. We also don'
				> t go in for all the 'guilt' stuff we
are meant to - guilt is soooo
				> over-rated :-). For example there are
kids at the school who have been
				> denied access to other schools because
they have 'behavioural and/or
				> emotional type issues' (I know,
shouldn't happen, shouldn't be denied
				> access anywhere, but it does) so our
school does take them with open
				> arms, but these families are then
sooooo grateful their kid has been
				> accepted they are not going to risk
making waves and subsequently they
				> have been forced into this position of
having to feel grateful and/or
				> disempowered by the system. So, when
you don't do the guilt thing, I
				> guess it becomes a bit confronting for
'the system'.
				> 
				> Hope it helps
				> 
				> Feel free to contact me anytime if you
think I can be useful. Mac's
				> birthday is in June - he might get his
iPhone then. So excessive
				> providing such a thing to a 6yo but I
honestly think it has the
				> potential to be such a fab tool for
him I will just have to cope with
				> being an over indulgent parent (guilt
free of course).
				> 
				> Gina
				> 
				> 
				> 
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From familyvoices at inpress.pledgonline.com  Mon Jun  1 02:02:54 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 1 Jun 2009 17:02:54 +0800
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <!~!UENERkVCMDkAAQACAAAAAAAAAAAAAAAAABgAAAAAAAAAYMutljv3RUGVsFiKpZtESsKAAAAQAAAAil+fmmGJOkaATZ0LQM/jDAEAAAAA@bigpond.com>
References: <C3068579D7F6C04E880805B00F81C23E4C6E4A@nitrogen1.syd1.local>
	<!~!UENERkVCMDkAAQACAAAAAAAAAAAAAAAAABgAAAAAAAAAYMutljv3RUGVsFiKpZtESsKAAAAQAAAAil+fmmGJOkaATZ0LQM/jDAEAAAAA@bigpond.com>
Message-ID: <001d01c9e298$166e17f0$434a47d0$@net.au>

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

?       Used by a wide variety of people of all ages, gender, ethnicity and
capacity

?       Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)

?       They live there by choice

?       They can come and go as they choose

?       They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)

?       They can make unquestioned risky decisions

?       They have control over their financial arrangements/budget

?       They can choose who they want to live with and be friends with

?       They can choose their recreational activities

?       They choose where, when and how they work

?       They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 

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From familyvoices at inpress.pledgonline.com  Mon Jun  1 02:53:57 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 1 Jun 2009 19:53:57 +1000
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <001d01c9e298$166e17f0$434a47d0$@net.au>
References: <C3068579D7F6C04E880805B00F81C23E4C6E4A@nitrogen1.syd1.local><!~!UENERkVCMDkAAQACAAAAAAAAAAAAAAAAABgAAAAAAAAAYMutljv3RUGVsFiKpZtESsKAAAAQAAAAil+fmmGJOkaATZ0LQM/jDAEAAAAA@bigpond.com>
	<001d01c9e298$166e17f0$434a47d0$@net.au>
Message-ID: <23B1E04D6573438598CD8F402822C992@dell91>

Oh yes!  But is amazing how you forget.  Sarah and I didn?t sleep for years.
She was on o2 first with a belt monitor then cpap for 7 years.  .

 

Gina thanks for Ipod thinking, someone has said something about manual
loading but not clear on it.

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: Monday, June 01, 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie :-)

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

*        Used by a wide variety of people of all ages, gender, ethnicity and
capacity

*        Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)

*        They live there by choice

*        They can come and go as they choose

*        They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)

*        They can make unquestioned risky decisions

*        They have control over their financial arrangements/budget

*        They can choose who they want to live with and be friends with

*        They can choose their recreational activities

*        They choose where, when and how they work

*        They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 

  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1532 of my spam emails to date.
The Professional version does not have this message.

 

  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1532 of my spam emails to date.
The Professional version does not have this message.

No virus found in this incoming message.
Checked by AVG - www.avg.com
Version: 8.5.339 / Virus Database: 270.12.46/2145 - Release Date: 05/31/09
05:53:00


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From familyvoices at inpress.pledgonline.com  Mon Jun  1 02:56:41 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 1 Jun 2009 19:56:41 +1000
Subject: FV: techno stuff
In-Reply-To: <001d01c9e298$166e17f0$434a47d0$@net.au>
References: <C3068579D7F6C04E880805B00F81C23E4C6E4A@nitrogen1.syd1.local><!~!UENERkVCMDkAAQACAAAAAAAAAAAAAAAAABgAAAAAAAAAYMutljv3RUGVsFiKpZtESsKAAAAQAAAAil+fmmGJOkaATZ0LQM/jDAEAAAAA@bigpond.com>
	<001d01c9e298$166e17f0$434a47d0$@net.au>
Message-ID: <377833EDE7FC4A888B6A1AD95C74EC75@dell91>

Hi all

I am thinking about getting a phone to receive emails. Any thoughts on
blackberry or IPhone.  Also anymore news out there about tablet/touch screen
laptops.

Sarah took her ipod touch to school for one day and they have now ordered a
touch screen for the computer.  Half way thru year 11 better late than
never.  The old you can lead a horse to water but cant make it drink. 

 

Jane Warner/Hudson

 

07 46714737

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, June 01, 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie :-)

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

*        Used by a wide variety of people of all ages, gender, ethnicity and
capacity

*        Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)

*        They live there by choice

*        They can come and go as they choose

*        They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)

*        They can make unquestioned risky decisions

*        They have control over their financial arrangements/budget

*        They can choose who they want to live with and be friends with

*        They can choose their recreational activities

*        They choose where, when and how they work

*        They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 

  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1532 of my spam emails to date.
The Professional version does not have this message.

 

  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1532 of my spam emails to date.
The Professional version does not have this message.

No virus found in this incoming message.
Checked by AVG - www.avg.com
Version: 8.5.339 / Virus Database: 270.12.46/2145 - Release Date: 05/31/09
05:53:00


-------------- next part --------------
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From familyvoices at inpress.pledgonline.com  Mon Jun  1 04:17:01 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 1 Jun 2009 11:17:01 +0000
Subject: FV: techno stuff
In-Reply-To: <377833EDE7FC4A888B6A1AD95C74EC75@dell91>
References: <C3068579D7F6C04E880805B00F81C23E4C6E4A@nitrogen1.syd1.local><!~!UENERkVCMDkAAQACAAAAAAAAAAAAAAAAABgAAAAAAAAAYMutljv3RUGVsFiKpZtESsKAAAAQAAAAil+fmmGJOkaATZ0LQM/jDAEAAAAA@bigpond.com><001d01c9e298$166e17f0$434a47d0$@net.au><377833EDE7FC4A888B6A1AD95C74EC75@dell91>
Message-ID: <1083459268-1243855029-cardhu_decombobulator_blackberry.rim.net-1387435423-@bxe1008.bisx.prodap.on.blackberry>

I can only say how much I love the blackberry - but given Sarah has an iphone it might be worth considering an iphone for yourself, and you could synch your phones?
Happy birthday for tomorrow, Jane!! Anita S xxx 
Sent from my BlackBerry? from Optus

-----Original Message-----
From: Family Voices <familyvoices at inpress.pledgonline.com>

Date: Mon, 1 Jun 2009 19:56:41 
To: <familyvoices at inpress.pledgonline.com>
Subject: FV: techno stuff


Hi all

I am thinking about getting a phone to receive emails. Any thoughts on
blackberry or IPhone.  Also anymore news out there about tablet/touch screen
laptops.

Sarah took her ipod touch to school for one day and they have now ordered a
touch screen for the computer.  Half way thru year 11 better late than
never.  The old you can lead a horse to water but cant make it drink. 

 

Jane Warner/Hudson

 

07 46714737

 

_____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, June 01, 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie :-)

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information? thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self? must change
Australian Building Standards when time permits?

 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant? ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 

_____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

*        Used by a wide variety of people of all ages, gender, ethnicity and
capacity

*        Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)

*        They live there by choice

*        They can come and go as they choose

*        They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)

*        They can make unquestioned risky decisions

*        They have control over their financial arrangements/budget

*        They can choose who they want to live with and be friends with

*        They can choose their recreational activities

*        They choose where, when and how they work

*        They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina

_____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 

_____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1532 of my spam emails to date.
The Professional version does not have this message.

 

_____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1532 of my spam emails to date.
The Professional version does not have this message.

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From familyvoices at inpress.pledgonline.com  Mon Jun  1 04:20:03 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 1 Jun 2009 21:20:03 +1000
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <001d01c9e298$166e17f0$434a47d0$@net.au>
Message-ID: <7sroog$bnsmda@ipmail05.adl2.internode.on.net>

Jaquie
 
Yes please, I am always keen to hear anything on sleep.
 
I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.
 
There are a few reasons we think Mac doesn?t sleep including any of the
following:
-          cortical vision blindness meaning he may not be getting enough
daylight brain messaging to inhibit the release of melatonin during the day
then there isn?t a good enough supply to get him through the night
-          same deal with the production of serotonin ie not enough to keep
him asleep through the night.
-          he is a nose breather so any nasal congestion causes him to get
very stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.
-          he is so incredibly tight in his muscles he turns into a pretzel
and is totally uncomfortable after a sleep stint of three-four hours no
matter what position you put him in.
-          he is naughty ? he cries for attention and is totally devastated
until you touch or speak to him, then he grins the biggest naughtiest grin ?
ugh  It has improved however, he used to poke his tongue out and make
himself gag and then projectile vomit for attention until we managed to
remove the projectile vomiting out of his ?list of talents?.
-          he used to get very stressed by the dark and quiet.  He used to
only cope if the lights were on and the tv on ? we have managed to wean him
out of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.
-          He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.
-          On the nights we have used valergan he has slept all night and
some nights only being rolled in the early hours of the morning but not
being any more uncomfortable when he wakes up, so not sure what that tells
us.  We wondered whether a memory foam mattress or a water bed could be
beneficial for him.
 
As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.
 
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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep
 
Hi Gina, and folks
 
I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!
 
Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Catherine & Meg
 
Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits

 
And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.
 
BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.
 
We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.
 
So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.
 
Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  
 
Cheers All
 
Gina
 
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Hi there, 
Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 
 
This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....
 
Response to contemporary standards claim (2)
Characteristics of village style accommodation for people without
disabilities 
*         Used by a wide variety of people of all ages, gender, ethnicity
and capacity
*         Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)
*         They live there by choice
*         They can come and go as they choose
*         They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)
*         They can make unquestioned risky decisions
*         They have control over their financial arrangements/budget
*         They can choose who they want to live with and be friends with
*         They can choose their recreational activities
*         They choose where, when and how they work
*         They can move out when they choose.
 
(This slide is courtesy of Anne Elysee)
 
 
Catherine
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Libby
I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  
 
I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.
 
Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.
 
Cheers
Gina
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.
 
Anywho
 
It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like
 
 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved
 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 
 - wanting to connect to other families interested in governing and running
their own supports.
 - working on valued roles in general
 - teaching others. Speaking at conferences and lectures and assisting
others to learn.
 
and so on
 
I think what I'm saying is that
 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.
 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.
 
All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 
 
Libby 
 
  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1532 of my spam emails to date.
The Professional version does not have this message.
 
  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1532 of my spam emails to date.
The Professional version does not have this message.

  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1627 of my spam emails to date.
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From familyvoices at inpress.pledgonline.com  Mon Jun  1 06:34:28 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 1 Jun 2009 14:34:28 +0100
Subject: FV: Facilitated communicaton
In-Reply-To: <1918AFBC616E4B80B13E4F5D2943796C@dell91>
References: <000f01c9dc58$47148650$c600a8c0@ANITA>
	<A301392811DD4BDA8E6B17150A879123@D8XYGK1S>
	<19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au>
	<65C85FB807EB430A82135C087DF32700@D8XYGK1S>
	<172F386E13044A428262A61380719B82DA00EC@jcmail>
	<002a01c9dd91$87a12090$96e361b0$@net.au>
	<AB5829E3D36F4964B3126F09371CAE64@SWEENEYDESKTOP>
	<172F386E13044A428262A61380719B82DA02B0@jcmail>
	<1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com>
	<1918AFBC616E4B80B13E4F5D2943796C@dell91>
Message-ID: <1d4342460906010634g3afa01beoa2ac8fcc79a08b89@mail.gmail.com>

Thank you, I look forward to hearing that someone will be able to assist me.
Brenda.

On Fri, May 29, 2009 at 12:35 AM, Family Voices <
familyvoices at inpress.pledgonline.com> wrote:

>  Hi all
>
>
>
> Brenda I have just come in have not really caught up with the thread but am
> also interested in the conversations re FC.  I have to go away this weekend,
> away from family voices  I am now printing off madly to show some of the
> wonderful words of wisdom.
>
>
>
> Right now I have a bit of headache so bit fuzzy but I have a thought in my
> head that we are not tracking the conversations so well.  Is there anyone
> out there with out a fuzzy head who can think of a simple way to have
> threads in line???
>
> Gina I have done the rule thing which is great another thing you have
> taught me but could we do something like that with subjects of
> conversations.
>
>
>
> Family voices is one of the most powerful things in my world at the moment,
> the sharing, knowledge, understanding is priceless.
>
> Hug to all
>
>
>
> Ps Hearing what you are saying Meg.  Was the house offer your new one or
> old one.  Keep riding that rollercoaster girlfriend and hang on!!!
>
>
>
> *Jane Warner/Hudson*
>
>
>
> *07 46714737*
>
>
>  ------------------------------
>
> *From:* familyvoices-bounces at inpress.pledgonline.com [mailto:
> familyvoices-bounces at inpress.pledgonline.com] *On Behalf Of *Family Voices
> *Sent:* Thursday, May 28, 2009 11:26 PM
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
>
>
> Hallo everyone,
>
>
>
> I am a parent of a son who had a head injury many years ago and did not
> come up through the child raising times and so I find your conversation very
> enlightening.  I now have a problem. I am travelling in Canada, using other
> people's computers, and wanted to forward the conversations about
> Facilitated Communication to someone I met this week. However, somehow I
> lost it. Would someone please forward those particular conversations to me
> again so that I may send them on to her.
>
>
>
> Regards,
>
>
>
> Brenda
>
> On Wed, May 27, 2009 at 8:10 PM, Family Voices <
> familyvoices at inpress.pledgonline.com> wrote:
>
> Another aspect of this we have faced is the absolutely IMPLICIT 'dependence
> learning' that is done through the very act of having support workers. This
> is so deep in Matthew, and I feel quite certain at this stage that this is
> an inherent aspect of the 'support worker' model. Matthew turns to the
> person he is with and puts his hand to his mouth (a morph of the drink/eat
> sign). This sign is a decision-making sign and one that he initiates. It's
> fabulous that he initiates it (decision-making in practice) but it quickly
> becomes a handing-over of power (that he also initiates). It's also the fact
> that he does it in the first place. Depending on the context, it variously
> means
>
>
>
>  - tell me what is happening next
>
>  - where are we going
>
>  - I want something
>
>  - who is coming after you bugger off (and are they going to be more
> exciting that you my boring sister?!)
>
>
>
> As you can see, depending on how you respond you can very easily become the
> locus of control.
>
>
>
> Why doesn't Matthew make a decision  - eg I want a drink - a go initiate
> it? He's capable of this with assistance (this was meant as a
> rhetorical/theoretical question). Instead he's learned so subtely and
> powerfully over the years that the people who come in to his home are
> responsible for this.
>
>
>
> I'm using this as an example, not really looking for suggestions here about
> others ways Matthew could communicate - we're really working on this.
>
>
>
> I think what I wanted to raise are actually issues around involvement of *paid
> people/unpaid people* - I have seen this as another topic of discussion
> here
>
>
>
> So much of what families/individuals are conditioned around is the need for
> paid support. Families (including ours), leap to it. However we baulk
> (including ours), are fearful, worried, don't think it could be possible etc
> around the unpaid stuff. We're taught (professional gift model) that this is
> what is needed. I look at the self-managed community participation options
> in NSW for example, where the work of families seems very quickly to be
> around hiring support workers to assist the young person in their
> post-school pursuits. It becomes like a vicious cycle - the more we get
> caught up in managing the paid system the easier it is to stay away from the
> (harder) work of the unpaid stuff.
>
>
>
> I have found in our accommodation agreement/arrangement with Matthew's
> service provider that we too get driven by this. His budget is there to use
> to hire support workers isn't it?
>
>
>
> It was therefore very interesting to hear Bruce Uditsky from Alberta,
> Canada talk at Family Advocacy conference a couple of years ago about this -
> their response has been to work on a number of projects that seek to
> systemically develop more natural supports. For example their partnership
> with Rotary where support on the job is built through co-workers.
>
>
>
> My example above is to talk about the potentially powerful impact of this
> on people and their decision-making capacity. There are many things we can
> do to help put power back into Matthew's hands, but many of these are really
> just fiddling, cos they don't get at the root, which is the very presence of
> the person whose job it is 'to help' (no matter how empowering they are in
> the practice of this role).
>
>
>
>
>
> *Libby *
>
> *_________________________________*
>
>
>
>
>  ------------------------------
>
> *From:* familyvoices-bounces at inpress.pledgonline.com [mailto:
> familyvoices-bounces at inpress.pledgonline.com] *On Behalf Of *Family Voices
>
> *Sent:* Wednesday, 27 May 2009 9:51 PM
>
>
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
>
>
> The response we are accustomed to is ?I don?t know? when she absolutely
> does know.  I think this comes from a place of wanting to please, not
> wanting to be to told no and also wanting to get the answer right.
> Depending on the complexity of the question we now give her ridiculous
> options like cat food on toast to push her to articulate her choice or
> reframing the question/breaking it down in sequential order to assist
> understanding and then decision making.  We are also very aware that if Jos
> makes a clear choice that we honor that (as much as we can, education about
> good food choices or bed times if very tired etc) even if it really puts us
> out otherwise her choice making is really redundant, leading to more I don?t
> know.  The other aspect is that we know her well and understand her
> reluctance to make decisions however if she were in a service world it would
> simply move on and make decisions on her behalf that suited the service not
> her as a person.  We are really keen to encourage her independent decision
> making as she will need it in the future to maintain her personal
> independence and protect her form being, excuse me, fucked around.  It?s
> interesting that what is a big ask for Jos would be just a natural
> occurrence for the other kids.  Todd and I are the moderators of this and we
> try to always be mindful that our power over her life is much more profound
> in good ways and also in not so good if were not careful to keep her
> interests at the forefront of our minds.
>
>
>
> Megs
>
>
>
> Offer on house accepted, meeting with new school held?still thinking,
> geriatric dog survived kennel experience (just), eldest child home from
> England tomorrow, middle child has new work placement at child care centre,
> youngest child 15 on Friday, just like everyone else ?..busy, and it?s now
> winter YUCK !!!!!
>
>
>  ------------------------------
>
> *From:* familyvoices-bounces at inpress.pledgonline.com [mailto:
> familyvoices-bounces at inpress.pledgonline.com] *On Behalf Of *Family Voices
> *Sent:* Tuesday, 26 May 2009 9:36 AM
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
>
>
> This is all so true...we all fill in the gaps of what we hear with our own
> assumptions. We have a terrific service dude here in Perth who works with
> the vela families who always reminds us that everyone?s default answer is
> always ?no?...until we have enough information.
>
>
>
> One of eli?s friends years ago used to routinely refuse to sleepover. I
> assumed, in my wounded heart maternal fashion, for about a year that he said
> no because he didn?t really want to be around eli that much because he was
> too weird. When i got around to asking him, he said...i?m planning to live
> with eli when i move out of home but i don?t think i am ready to look after
> him all by myself yet. This young man was 13`at the time, and for some
> reason he had assumed that a sleepover meant me and Darryl wouldn?t be here!
> We?ve had many sleepovers since and even now, 4 years later, some. Weekends
> liam almost lives here.
>
>
>
> One strategy we?ve been using with one family is to build up an image of
> adult life using favourite movies and tv shows. We have a young woman at
> present with some challenges around adult behaviour, and are using her
> favourite tv series ?Friends? to help her to identify adult vs childish ways
> of being. So far it has been very successful. I think this process of
> developing an adult identity is comlex for all of us.
>
>
>
> We?ve had some awesome help with this from the international men?s group
> Mankind Project who eli is in the process of joining. I recommend them from
> what i have seen so far to anyone with sons who are transitioning into an
> adult male identity, but they have been profound and magnificent in their
> welcome and inclusion of eli so far. Check out the website:
>
>
>
> http://www.mkp.org/
>
>
>
> Jaquie
>
>
>
>
>
>
>
> *From:* familyvoices-bounces at inpress.pledgonline.com [mailto:
> familyvoices-bounces at inpress.pledgonline.com] *On Behalf Of *Family Voices
> *Sent:* Monday, 25 May 2009 11:31 AM
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
>
>
> That's really interesting Jill and has really made me think! Quite a ground
> breaking thing - so simple yet so easily missed. This has really made me
> think about my language and how we assume so much in our conversations in
> life
>
>
>
> *Libby *
>
> *_________________________________*
>
>
>
>
>  ------------------------------
>
> *From:* familyvoices-bounces at inpress.pledgonline.com [mailto:
> familyvoices-bounces at inpress.pledgonline.com] *On Behalf Of *Family Voices
> *Sent:* Monday, 25 May 2009 11:49 AM
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
> Hi Jill, Interesting that the wording was the hold back. I did ask Lauren
> if she was lonely and was our home too big for her to manage. But she just
> looked at me vaguely and said no. Maybe I should word it differently. I
> don't want her to feel she HAS to move away from her security either. It
> might take years for us to get to a place where she lives independently of
> us, but I feel we have started her thinking she can do it.
>
> When are you going to South America Jill?
>
> Maureen
>
>  ----- Original Message -----
>
> *From:* Family Voices <familyvoices at inpress.pledgonline.com>
>
> *To:* familyvoices at inpress.pledgonline.com
>
> *Sent:* Monday, May 25, 2009 11:37 AM
>
> *Subject:* Re: FV: What is inclusion?
>
>
>
> Hi Maureen
>
> Great news about Lauren's 'holiday'!  I can relate to it so well as it was
> the same for me with Ben when I returned from Canada.    Apart from his solo
> experience whilst I was in Canada, I eventually worked out what was adding
> to his concern re living independently.  I used to say to him "wouldn't you
> like to live by yourself?" or something similar and just lately twigged that
> he was taking this literally and thinking that he would be just in the house
> by himself with nothing else happening!  When I thought to add that he would
> still go to work, go out with friends, visit me etc, his whole attitude
> changed.  Silly me, thought he was a mind reader!  Ben has now agreed to
> having a look at some places for himself, so we will gradually do some open
> inspections.  More holidays on the horizon for you!
>
> Regards
>
> Jill
>
>
>
>
>
> Hello everyone,
>
> Life has been busy here and I have been reading all the contributions and
> not participating. Just reading..
>
> "Moving Mum"can be as stressful as thinking about moving our young ones
> into places of their own. As I have a 91 y.o. Mum who lives in an retirement
> apartment and is very independent, but she can't drive or attend medical
> appointments without some assistance and so I (and others) are always there
> for her. We are a huge family, and we love sharing the responsibility of
> Mum, but for others like Anita, who are "IT" - the problems can't be shared
> - there is a huge responsibility.
>
> There is such a close parallel between disability and aged care. I often
> see the same issues arise between Mum and Lauren. Age is not the barrier!
>
>
>
> My good story for the day is..
>
> Murdoch and I went to Hobart for three nights of respite and golf.. We ate
> too much and drank too much and went to the casino and the horse track and
> generally enjoyed ourselves.
>
> All this was possible because we "bit the bullet"and left Lauren at home -
> ALONE!!
>
> I had prepared a few meals in advance. She ordered a Pizza to share with a
> friend who came over and stayed on Saturday night. They took themselves out
> to brunch on Sunday morning and she managed her life and recreation very
> well without us.. We are delighted to tell you we are
>
> very excited about her independence, but more so, she was so delighted to
> see us!!
>
>
>
> Aren't we lucky? To be greeted so lovingly and warmly when we drove in the
> garage and her little laughing face was at the door. My other kids never
> greet me so welcomingly! She really loves us..That is so nice. It is so
> evident even though she just can't bring herself to mouth the words"I love
> you Mum and Dad"- We have blessed evidence and that is so nice for us!
>
>
>
> I hope you are all well
>
> Maureen
>
>
>
>  ----- Original Message -----
>
> *From:* Family Voices <familyvoices at inpress.pledgonline.com>
>
> *To:* familyvoices at inpress.pledgonline.com
>
> *Sent:* Sunday, May 24, 2009 8:13 PM
>
> *Subject:* Re: FV: What is inclusion?
>
>
>
> Thanks Jaquie . . . I appreciate your thoughts  - I'm off on a holiday for
> two weeks so hopefully I'll come back with a peaceful and clearer mind!
>
>
>
> Cheers!
>
> J
>
> Anita O'Brien
>
> 6 Bogong Court
>
> Doncaster East 3109
>
> Ph: 03 9841 8492
>
> Mobile: 0416 064 045
>
> email: anita.obrien at optusnet.com.au
>
> -----Original Message-----
> *From:* Family Voices [mailto:familyvoices at inpress.pledgonline.com<familyvoices at inpress.pledgonline.com>
> ]
> *Sent:* Sunday, 24 May 2009 5:28 PM
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
> Hey Anita
>
> I just went through this myself.
>
> I don?t really have any sage advice, other than to say that the microboard
> model has been extended in North America to successfully cover situations
> like this one..ie so folks can be supported at home. That probably doesn?t
> help you directly as the model is still so much in development, but is there
> a way you could use the circle of friends idea to provide support to your
> mum in the new location....these issues we face with our kids are the same
> we all face at the times we most need support. Even if your mum needs to
> live in the ILU or somewhere with more supported, person centred planning
> can still help to make the service provision and her life as close as
> possible to what she wants and needs. Also Essential Lifestyle Planning is
> really good in this situation.
>
> I feel for you....it seems a cruel thing that us parents seem to commonly
> have to deal with our kids and our parents transitions at the same time.
>
> Let me know when you have downloaded Skype!
>
> Jaquie
>
> *From:* familyvoices-bounces at inpress.pledgonline.com [
> mailto:familyvoices-bounces at inpress.pledgonline.com<familyvoices-bounces at inpress.pledgonline.com>
> ] *On Behalf Of *Family Voices
> *Sent:* Thursday, 21 May 2009 2:29 PM
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
> Hi everyone,
>
> Loved the Kathie Snow statement AnitaS!
>
> Great story about Dan & Jack, Jo, of what can happen out there in the
> community, how Dan was the connector!  These experiences do keep you going.
>
> *Inclusion for the elderly - don't always want it.*
>
> I have been spending much time caring for my 88-yr old mother in law, who
> has shifted unwillingly to an independent living unit in a retirement
> village.  She needs quite a lot of support and we have some in place, but
> she really needs hostel care or nursing home.  We tried to make the
> transition easier for her from home to ILU.  It would have been great for
> her to stay in her own home and we have been supporting her to do so for
> nine years plus, but her vulnerability is such that we had no choice.
> Quite a few people she knows in the village but up to now she doesn't seem
> to want to mingle anymore than she has to.  This situation seems to go
> against all I believe and work towards for Warren;  Her choice would be her
> family home - & hide away.  On top of this we have had a mountain of
> cleaning up to do to get her house ready for sale.  If anyone has some sage
> advice I'm happy to listen.
>
> Thinking about getting on Skype myself - let you know how I go Jo.
>
> Warm wishes to everyone!
>
> xo
>
> AnitaO
>
>  -----Original Message-----
> *From:* Family Voices [mailto:familyvoices at inpress.pledgonline.com<familyvoices at inpress.pledgonline.com>
> ]
> *Sent:* Wednesday, 20 May 2009 10:51 PM
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
> Wow, I?m worn out thinking about all that travelling ? I hope it?ll be for
> a few weeks.  Yes, it is a small world and what a great opportunity to catch
> up with Bruce to maybe get his reflections.  Go Girl ? congratulations
> Rachel on getting the gig ? I looove Rock n Roll (am I on the right track).
>
> I?ll get dad to run a copy of the DVD for you (are you reading this dad?) ?
> not a heap on it but enough to enjoy and bring back those memories.
>
> Love Jo
>
> *From:* familyvoices-bounces at inpress.pledgonline.com [
> mailto:familyvoices-bounces at inpress.pledgonline.com<familyvoices-bounces at inpress.pledgonline.com>
> ] *On Behalf Of *Family Voices
> *Sent:* Wednesday, 20 May 2009 7:05 PM
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
> Hello Jo Good to hear you and remember our time at the Ho Down and of
> course other moments, How did the film come out. It would be good to see.
> We are off to Dublin in August and now not only will Rachel  present
> a paper she is  being invited to be part of the demonstration Rock and Roll
> team. Rather her than me but she seems happy with the task. there are nine
> other from the Down Syndrome group who have been involved for a long time so
> she has a bit of work to do. Still they seemed keen to have her after they
> asked her to go for a audition. She will also be performing in her two woman
> show in London so she is going to be busy. I am looking forward to catching
> up with Bridget as she son will both be there, Actually it will be great
> because I see from the program that Bruce will also be attending. We might
> just have our own little meeting and hear from him how he thought our visit
> went. It is a small world really isn't it. We will spend some time with my
> sister and her family england and then go to South Africa on the way home to
> see my Brothers family.
> You take care Miriam
>  ------------------------------
>
> To: familyvoices at inpress.pledgonline.com
> Date: Wed, 20 May 2009 08:10:02 +0800
> From: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: What is inclusion?
>
> Thanks Miriam, it?s lovely to hear from you.  When are you off on your trip
> ? must be coming up fast now.  Hope all is well with you and the family,
>
> Love Jo
>
> *From:* familyvoices-bounces at inpress.pledgonline.com [
> mailto:familyvoices-bounces at inpress.pledgonline.com<familyvoices-bounces at inpress.pledgonline.com>
> ] *On Behalf Of *Family Voices
> *Sent:* Monday, 18 May 2009 7:46 PM
> *To:* familyvoices at inpress.pledgonline.com
> *Subject:* Re: FV: What is inclusion?
>
> Hi Jo I loved your happy weekend story. and the glimpse of you in your
> home. I hope the education stuff gets better for you, sadly it is such a
> long hard journey. You take care my warmest wishes  Miriam
>
> > To: familyvoices at inpress.pledgonline.com
> > Date: Sun, 17 May 2009 18:48:14 +0800
> > From: familyvoices at inpress.pledgonline.com
> > Subject: Re: FV: What is inclusion?
> >
> > Hi Everyone,
> >
> > It is 5pm West Aussie time and I have been sitting here with a loooovely
> > glass of Cab/Sav catching up on the conversation on FV learning from one
> of
> > my favourite sources.
> >
> > I am feeling pleasantly tired after being away to a Velor Microboard
> Weekend
> > at Fairbridge (just north of Pinjarra) with another amazing group of
> people
> > from all over the state learning more about inclusion and how to invite
> > others to be an integral part of our sons life. While I was learning this
> > stuff Dan was out having fun on the flying fox, abseiling, bush walking
> etc
> > supported by new friends.....
> >
> > Would like to share this story from the weekend, Dan and a young man,
> Jack
> > connected with one another on Saturday, I only discovered the connection
> > this morning when Jack walked by at breakfast and I saw Dan's arm shoot
> up
> > to give him a 'high five', Jack stopped, said good morning, how are you
> > mate, had a bit more of a chat and went off to have brekky. The abseiling
> > was happening after breakfast and after some discussion with the
> Coordinator
> > she approached Jack to ask if he would take Dan abseiling which he
> readily
> > agreed to. When lunch time came around, Dan arrived back at the hall with
> > Steve, minus Jack - I was wondering if everything went ok and decided to
> > follow up with him when I could. 15 minutes later he came in and sat
> down,
> > I thanked him for helping Dan out and he said "it's me that will be
> thanking
> > Dan", he explained that he had never abseiled before so prior to taking
> Dan
> > up he did a dummy run on his own, then he went up and down with Dan.
> After
> > everyone had had their turn the instructor offered Jack a weekend job,
> Jack
> > said he didn't know much about abseiling and the response was "if you can
> > support someone the way you did with Dan, talking to him all the way up
> and
> > down, helping him out where he needed, you know everything you need to
> > know". Jack was stoked (he's 16) and I was in awe of him being so
> > appreciative of Dan who helped him get the job. One day I'll stop being
> > surprised but right now I still get caught out with how there are others
> who
> > are so appreciative of our kids. Just wanted to share a warm and fuzzy -
> > they help me keep going with the other hard slog stuff we have to face -
> > thank goodness for these little gems.
> >
> > I have some education stuff happening (negative) but don't want to go
> into
> > it just now after my enjoyable weekend so will ask for some comments at
> > another time when I'm ready to tackle it.......wish it could be never!
> > Jo
> >
> >
> >
> > -----Original Message-----
> > From: familyvoices-bounces at inpress.pledgonline.com
> > [mailto:familyvoices-bounces at inpress.pledgonline.com<familyvoices-bounces at inpress.pledgonline.com>]
> On Behalf Of Family
> > Voices
> > Sent: Sunday, 17 May 2009 2:39 PM
> > To: familyvoices at inpress.pledgonline.com
> > Subject: Re: FV: What is inclusion?
> >
> > HI Gina
> > Just been skyping with Anita. Wow is that scary I think the rule should
> be
> > only head for camera.
> >
> > I have also just gone to itunes and downloaded away the podcasts?? What
> are
> > they?
> >
> > Is anyone interested in skypeing?
> > Cheers Jane
> >
> >
> > Jane Warner/Hudson
> >
> > 07 46714737
> >
> >
> > -----Original Message-----
> > From: familyvoices-bounces at inpress.pledgonline.com
> > [mailto:familyvoices-bounces at inpress.pledgonline.com<familyvoices-bounces at inpress.pledgonline.com>]
> On Behalf Of Family
> > Voices
> > Sent: Sunday, May 17, 2009 1:32 PM
> > To: familyvoices at inpress.pledgonline.com
> > Subject: Re: FV: What is inclusion?
> >
> > Hi Jane
> >
> > Bearing in mind I haven't got P2Go at this stage but this is only as I
> > understand it...
> >
> > Q/ With the prolquo when I go into "about me" Can I put in stuff where
> > it
> > says "I go to the .....school?" ie Goondiwindi. If it is yes I will
> > then
> > work out how, I just don't want to be trying to work something out that
> > I
> > cant do.
> >
> > I believe you can add in your own words etc, you might have to fiddle
> > with the spelling, punctuation etc of Goondawindi to get the voice to
> > say it well enough for you to be happy with, ie it might need some
> > phonetic spelling, hyphens etc to work it out. In time you will work
> > out how to spell things to have the 'real voice' pronounce it well
> > enough.
> >
> > Q/Which manual or directions do you think are the simplest for
> > programming?
> >
> > Have you joined the P2Go group - there are some great parents who have
> > been beta testing it on that group and they are very keen to help out.
> > I posted the link a while back, but can resend if you need it. These
> > are people actually using it for their kids now, so would be great to
> > post your specific questions to them. The developers are very hands on
> > too.
> >
> >
> > Q/ Do you think it would be worth my while to get a Iphone for me? (I
> > saw
> > one on ebay that looked ok), Sarah have the Ipod so that I can learn to
> > use
> > it while she is. At some stage I would like her to use the phone just
> > not
> > sure if this is the right tool. Ie my thought for her was maybe a phone
> > with video connection to me so she can learn mum rings, I see her face
> > and
> > from their we learn answering and talk back.
> >
> > We haven't got the iPhone yet, but this was our plan... Shawn is off
> > contract with his phone at the moment having changed jobs and now for
> > the first time in his working career not provided a phone (shame about
> > that). So he was going to lock into a $49 or $59 capped plan to curb
> > his costs each month. Optus are currently offering iPhone plans with a
> > 8gig phone at this price so we believe we could sign up to one of those
> > plans, bring his number across to that plan, then move the sim card to
> > his Samsung phone an then just use the iPhone for Mac without a sim card
> > (or buy a cheap prepaid plan if we felt it was good as an emergency
> > phone). At least that way I could start developing options for its use,
> > start storing things I would normally store on a stepped switch
> > communicator and so on.
> >
> > I still need to find a way to switch adapt it, no-one has worked that
> > out yet - but I will keep trying.
> >
> > You would just have to check out the costs/capabilities of video calls
> > if that was a goal - I don't know much about that. Maybe skype is
> > available to use via the internet connections rather than phone calls -
> > not sure on that one.
> >
> >
> > In saying all this she is very good with the ipod I put hi five and
> > wiggles
> > on yesterday and it is a hit.
> >
> > There are also some great free PIXAR short films on iTunes you can
> > download - Mac loves them. Also check out the podcasts that are out
> > there. We found heaps of stories for Mac on podcasts (all free). Mac
> > has a very eclectic selection on his ipod. Jason Mraz is a big hit, he
> > likes to sing along, but he also likes some albums called 'Little
> > Voices' which is kids singing more contemporary and classic songs. He
> > seems to have ended his Tom Jones phase (now that the 'beer ad' is off
> > tv), still partial to some Kiss from time to time. He is a funny kid
> > really - he would be happy to have some big political speeches on there,
> > loves a big political statement on the news, he readily 'glaarrs' along
> > with the speaker - we are not sure whether he is 'for or agin' Mr Rudd
> > yet, but he certainly pipes up everytime Kevvy is banging on about stuff
> > on tv or radio.
> >
> > I am also going to see what I can learn about the Database program Bento
> > which can be used on the iPhone and see if a PODD style system could be
> > converted into that format. Just trying to find some workshops on PODD
> > systems somewhere in the country at the moment so I can learn more.
> >
> > Sorry more questions, where is the best place to get easy step by step
> > instructions to use ipod ie move programs on front page.
> >
> > Check out their website at http://www.proloquo2go.com/
> > <http://www.proloquo2go.com/>
> >
> >
> > Can I download a dvd to ipod direct or does everything have to go thru
> > itunes?
> >
> > I think you can just convert a DVD into ipod formats - there would be
> > software to do that depending on whether you are on PC or Mac. Some
> > might be freeware, some cheap, some expensive. Again, since I haven't
> > got the touch yet I can't be sure.
> >
> > Thanks Gina. You are such a inspirtation, I would love to get you to do
> > a
> > workshop for want of a better word in Goondiwindi. The young families I
> > work with could learn so much from you.
> > Anytime :-)
> >
> > Just a thought which I am sure you have covered, when you talk with the
> > school do you have someone beside you?
> >
> > I have my husband sitting beside me for all these meetings. I would not
> > go in there alone for love nor money. We sometimes don't think it is
> > fair on those we meet with. Shawn and I have been together now for 21
> > years and know exactly where one another sits on issues so we can play
> > the "good cop/bad cop" roles pretty well, and where we know it is
> > unfair, is that we switch mid meeting if it is needed. Because Shawn
> > has been doing so much study on disability representation in the Media
> > etc he is great because he can just spout stuff, but also because he is
> > a journalist he is trained to question, so he turns their questions
> > round back at them - so we know we don't really play fair. We also don'
> > t go in for all the 'guilt' stuff we are meant to - guilt is soooo
> > over-rated :-). For example there are kids at the school who have been
> > denied access to other schools because they have 'behavioural and/or
> > emotional type issues' (I know, shouldn't happen, shouldn't be denied
> > access anywhere, but it does) so our school does take them with open
> > arms, but these families are then sooooo grateful their kid has been
> > accepted they are not going to risk making waves and subsequently they
> > have been forced into this position of having to feel grateful and/or
> > disempowered by the system. So, when you don't do the guilt thing, I
> > guess it becomes a bit confronting for 'the system'.
> >
> > Hope it helps
> >
> > Feel free to contact me anytime if you think I can be useful. Mac's
> > birthday is in June - he might get his iPhone then. So excessive
> > providing such a thing to a 6yo but I honestly think it has the
> > potential to be such a fab tool for him I will just have to cope with
> > being an over indulgent parent (guilt free of course).
> >
> > Gina
> >
> >
> >
> > ________________________________
> >
> > I am using the Free version of SPAMfighter
> > <http://www.spamfighter.com/len> .
> > We are a community of 6 million users fighting spam.
> > SPAMfighter has removed 1588 of my spam emails to date.
> > The Professional version does not have this message.
> >
> >
> > No virus found in this incoming message.
> > Checked by AVG - www.avg.com
> > Version: 8.5.325 / Virus Database: 270.12.32/2118 - Release Date:
> 05/16/09
> > 17:05:00
> >
> >
> >
> >
>  ------------------------------
>
> Find car news, reviews and more Looking to change your car this year?<http://a.ninemsn.com.au/b.aspx?URL=http://secure-au.imrworldwide.com/cgi-bin/a/ci_450304/et_2/cg_801459/pi_1004813/ai_859641&_t=762955845&_r=tig_OCT07&_m=EXT>
>   ------------------------------
>
> Let ninemsn property help Looking to move somewhere new this winter?<http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fninemsn%2Edomain%2Ecom%2Eau%2F%3Fs%5Fcid%3DFDMedia%3ANineMSN%5FHotmail%5FTagline&_t=774152450&_r=Domain_tagline&_m=EXT>
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> No virus found in this incoming message.
> Checked by AVG - www.avg.com
> Version: 8.5.339 / Virus Database: 270.12.44/2140 - Release Date: 05/28/09
> 18:09:00
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From familyvoices at inpress.pledgonline.com  Mon Jun  1 16:21:55 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 2 Jun 2009 09:21:55 +1000
Subject: FV: techno information
In-Reply-To: <55F2F2E5867848349F430013C155CA68@dell91>
References: <000f01c9dc58$47148650$c600a8c0@ANITA><A301392811DD4BDA8E6B17150A879123@D8XYGK1S><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au><65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au><AB5829E3D36F4964B3126F09371CAE64@SWEENEYDESKTOP><172F386E13044A428262A61380719B82DA02B0@jcmail>	<1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com><1918AFBC616E4B80B13E4F5D2943796C@dell91>	<001f01c9e0ec$96296a10$c27c3e30$@com>
	<55F2F2E5867848349F430013C155CA68@dell91>
Message-ID: <001501c9e30f$c1e90be0$45bb23a0$@com.au>

Hi Jane,
Hope you are really well. I don't know if you have an answer to this but you
need to connect it to your computer and then choose (Manually sync in setup)
If you can't find it I will go through the process again at home and step
you through it.
Miss our early morning - late night chats - Take care
Cheers Helen

Helen Durbidge
Property Sales
Kirkland Real Estate
9/8 Bowra St
Urunga NSW 2455
Email - helen at kirklandrealestate.com.au
www.kirklandrealestate.com.au
Phone: 66556167 or 0401805298


-----Original Message-----
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: techno information


Hello all

Can anyone tell me how I download off two itunes sites?  I have registered
Sarah's ipod (I think) to a I tunes site and my son has a itunes as well.
When I go to his and download his music it wipes out the stuff I have set up
on other.

Still haven't worked out proloque2go program.

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: Saturday, May 30, 2009 4:05 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Facilitated communicaton

It would do this and sort them but you have to change the header
(subject) of each positing to keep the thread the same.

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Friday, 29 May 2009 7:35 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Facilitated communicaton

 

Hi all

 

Brenda I have just come in have not really caught up with the thread but
am also interested in the conversations re FC.  I have to go away this
weekend, away from family voices  I am now printing off madly to show
some of the wonderful words of wisdom.

 

Right now I have a bit of headache so bit fuzzy but I have a thought in
my head that we are not tracking the conversations so well.  Is there
anyone out there with out a fuzzy head who can think of a simple way to
have threads in line???

Gina I have done the rule thing which is great another thing you have
taught me but could we do something like that with subjects of
conversations.

 

Family voices is one of the most powerful things in my world at the
moment, the sharing, knowledge, understanding is priceless.

Hug to all

 

Ps Hearing what you are saying Meg.  Was the house offer your new one or
old one.  Keep riding that rollercoaster girlfriend and hang on!!!

 

Jane Warner/Hudson

 

07 46714737

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Thursday, May 28, 2009 11:26 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

Hallo everyone,

 

I am a parent of a son who had a head injury many years ago and did not
come up through the child raising times and so I find your conversation
very enlightening.  I now have a problem. I am travelling in Canada,
using other people's computers, and wanted to forward the conversations
about Facilitated Communication to someone I met this week. However,
somehow I lost it. Would someone please forward those particular
conversations to me again so that I may send them on to her.

 

Regards,

 

Brenda

On Wed, May 27, 2009 at 8:10 PM, Family Voices
<familyvoices at inpress.pledgonline.com> wrote:

Another aspect of this we have faced is the absolutely IMPLICIT
'dependence learning' that is done through the very act of having
support workers. This is so deep in Matthew, and I feel quite certain at
this stage that this is an inherent aspect of the 'support worker'
model. Matthew turns to the person he is with and puts his hand to his
mouth (a morph of the drink/eat sign). This sign is a decision-making
sign and one that he initiates. It's fabulous that he initiates it
(decision-making in practice) but it quickly becomes a handing-over of
power (that he also initiates). It's also the fact that he does it in
the first place. Depending on the context, it variously means

 

 - tell me what is happening next

 - where are we going

 - I want something

 - who is coming after you bugger off (and are they going to be more
exciting that you my boring sister?!)

 

As you can see, depending on how you respond you can very easily become
the locus of control.

 

Why doesn't Matthew make a decision  - eg I want a drink - a go initiate
it? He's capable of this with assistance (this was meant as a
rhetorical/theoretical question). Instead he's learned so subtely and
powerfully over the years that the people who come in to his home are
responsible for this.

 

I'm using this as an example, not really looking for suggestions here
about others ways Matthew could communicate - we're really working on
this.

 

I think what I wanted to raise are actually issues around involvement of
paid people/unpaid people - I have seen this as another topic of
discussion here

 

So much of what families/individuals are conditioned around is the need
for paid support. Families (including ours), leap to it. However we
baulk (including ours), are fearful, worried, don't think it could be
possible etc around the unpaid stuff. We're taught (professional gift
model) that this is what is needed. I look at the self-managed community
participation options in NSW for example, where the work of families
seems very quickly to be around hiring support workers to assist the
young person in their post-school pursuits. It becomes like a vicious
cycle - the more we get caught up in managing the paid system the easier
it is to stay away from the (harder) work of the unpaid stuff. 

 

I have found in our accommodation agreement/arrangement with Matthew's
service provider that we too get driven by this. His budget is there to
use to hire support workers isn't it? 

 

It was therefore very interesting to hear Bruce Uditsky from Alberta,
Canada talk at Family Advocacy conference a couple of years ago about
this - their response has been to work on a number of projects that seek
to systemically develop more natural supports. For example their
partnership with Rotary where support on the job is built through
co-workers.

 

My example above is to talk about the potentially powerful impact of
this on people and their decision-making capacity. There are many things
we can do to help put power back into Matthew's hands, but many of these
are really just fiddling, cos they don't get at the root, which is the
very presence of the person whose job it is 'to help' (no matter how
empowering they are in the practice of this role).

 

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices

Sent: Wednesday, 27 May 2009 9:51 PM 


To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

The response we are accustomed to is "I don't know" when she absolutely
does know.  I think this comes from a place of wanting to please, not
wanting to be to told no and also wanting to get the answer right.
Depending on the complexity of the question we now give her ridiculous
options like cat food on toast to push her to articulate her choice or
reframing the question/breaking it down in sequential order to assist
understanding and then decision making.  We are also very aware that if
Jos makes a clear choice that we honor that (as much as we can,
education about good food choices or bed times if very tired etc) even
if it really puts us out otherwise her choice making is really
redundant, leading to more I don't know.  The other aspect is that we
know her well and understand her reluctance to make decisions however if
she were in a service world it would simply move on and make decisions
on her behalf that suited the service not her as a person.  We are
really keen to encourage her independent decision making as she will
need it in the future to maintain her personal independence and protect
her form being, excuse me, fucked around.  It's interesting that what is
a big ask for Jos would be just a natural occurrence for the other kids.
Todd and I are the moderators of this and we try to always be mindful
that our power over her life is much more profound in good ways and also
in not so good if were not careful to keep her interests at the
forefront of our minds.

 

Megs

 

Offer on house accepted, meeting with new school held.still thinking,
geriatric dog survived kennel experience (just), eldest child home from
England tomorrow, middle child has new work placement at child care
centre, youngest child 15 on Friday, just like everyone else ...busy,
and it's now winter YUCK !!!!!

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Tuesday, 26 May 2009 9:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

This is all so true...we all fill in the gaps of what we hear with our
own assumptions. We have a terrific service dude here in Perth who works
with the vela families who always reminds us that everyone's default
answer is always 'no'...until we have enough information.

 

One of eli's friends years ago used to routinely refuse to sleepover. I
assumed, in my wounded heart maternal fashion, for about a year that he
said no because he didn't really want to be around eli that much because
he was too weird. When i got around to asking him, he said...i'm
planning to live with eli when i move out of home but i don't think i am
ready to look after him all by myself yet. This young man was 13`at the
time, and for some reason he had assumed that a sleepover meant me and
Darryl wouldn't be here! We've had many sleepovers since and even now, 4
years later, some. Weekends liam almost lives here.

 

One strategy we've been using with one family is to build up an image of
adult life using favourite movies and tv shows. We have a young woman at
present with some challenges around adult behaviour, and are using her
favourite tv series 'Friends' to help her to identify adult vs childish
ways of being. So far it has been very successful. I think this process
of developing an adult identity is comlex for all of us.

 

We've had some awesome help with this from the international men's group
Mankind Project who eli is in the process of joining. I recommend them
from what i have seen so far to anyone with sons who are transitioning
into an adult male identity, but they have been profound and magnificent
in their welcome and inclusion of eli so far. Check out the website:

 

http://www.mkp.org/ 

 

Jaquie

 

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:31 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

That's really interesting Jill and has really made me think! Quite a
ground breaking thing - so simple yet so easily missed. This has really
made me think about my language and how we assume so much in our
conversations in life

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:49 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

Hi Jill, Interesting that the wording was the hold back. I did ask
Lauren if she was lonely and was our home too big for her to manage. But
she just looked at me vaguely and said no. Maybe I should word it
differently. I don't want her to feel she HAS to move away from her
security either. It might take years for us to get to a place where she
lives independently of us, but I feel we have started her thinking she
can do it.

When are you going to South America Jill?

Maureen

	----- Original Message ----- 

	From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com>  

	To: familyvoices at inpress.pledgonline.com 

	Sent: Monday, May 25, 2009 11:37 AM

	Subject: Re: FV: What is inclusion?

	 

	Hi Maureen 

	Great news about Lauren's 'holiday'!  I can relate to it so well
as it was the same for me with Ben when I returned from Canada.    Apart
from his solo experience whilst I was in Canada, I eventually worked out
what was adding to his concern re living independently.  I used to say
to him "wouldn't you like to live by yourself?" or something similar and
just lately twigged that he was taking this literally and thinking that
he would be just in the house by himself with nothing else happening!
When I thought to add that he would still go to work, go out with
friends, visit me etc, his whole attitude changed.  Silly me, thought he
was a mind reader!  Ben has now agreed to having a look at some places
for himself, so we will gradually do some open inspections.  More
holidays on the horizon for you!

	Regards

	Jill

	 

	 

	Hello everyone,

	Life has been busy here and I have been reading all the
contributions and not participating. Just reading..

	"Moving Mum"can be as stressful as thinking about moving our
young ones into places of their own. As I have a 91 y.o. Mum who lives
in an retirement apartment and is very independent, but she can't drive
or attend medical appointments without some assistance and so I (and
others) are always there for her. We are a huge family, and we love
sharing the responsibility of Mum, but for others like Anita, who are
"IT" - the problems can't be shared - there is a huge responsibility.

	There is such a close parallel between disability and aged care.
I often see the same issues arise between Mum and Lauren. Age is not the
barrier!

	 

	My good story for the day is..

	Murdoch and I went to Hobart for three nights of respite and
golf.. We ate too much and drank too much and went to the casino and the
horse track and generally enjoyed ourselves.

	All this was possible because we "bit the bullet"and left Lauren
at home - ALONE!!

	I had prepared a few meals in advance. She ordered a Pizza to
share with a friend who came over and stayed on Saturday night. They
took themselves out to brunch on Sunday morning and she managed her life
and recreation very well without us.. We are delighted to tell you we
are

	very excited about her independence, but more so, she was so
delighted to see us!!

	 

	Aren't we lucky? To be greeted so lovingly and warmly when we
drove in the garage and her little laughing face was at the door. My
other kids never greet me so welcomingly! She really loves us..That is
so nice. It is so evident even though she just can't bring herself to
mouth the words"I love you Mum and Dad"- We have blessed evidence and
that is so nice for us!

	 

	I hope you are all well

	Maureen

	 

		----- Original Message -----

		From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com> 

		To: familyvoices at inpress.pledgonline.com

		Sent: Sunday, May 24, 2009 8:13 PM

		Subject: Re: FV: What is inclusion?

		 

		Thanks Jaquie . . . I appreciate your thoughts  - I'm
off on a holiday for two weeks so hopefully I'll come back with a
peaceful and clearer mind!

		 

		Cheers!

		J

		Anita O'Brien

		6 Bogong Court

		Doncaster East 3109

		Ph: 03 9841 8492

		Mobile: 0416 064 045

		email: anita.obrien at optusnet.com.au
<mailto:anita.obrien at optusnet.com.au> 

			-----Original Message-----
			From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
			Sent: Sunday, 24 May 2009 5:28 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hey Anita

			I just went through this myself.

			I don't really have any sage advice, other than
to say that the microboard model has been extended in North America to
successfully cover situations like this one..ie so folks can be
supported at home. That probably doesn't help you directly as the model
is still so much in development, but is there a way you could use the
circle of friends idea to provide support to your mum in the new
location....these issues we face with our kids are the same we all face
at the times we most need support. Even if your mum needs to live in the
ILU or somewhere with more supported, person centred planning can still
help to make the service provision and her life as close as possible to
what she wants and needs. Also Essential Lifestyle Planning is really
good in this situation.

			I feel for you....it seems a cruel thing that us
parents seem to commonly have to deal with our kids and our parents
transitions at the same time.

			Let me know when you have downloaded Skype!

			Jaquie

			From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
			Sent: Thursday, 21 May 2009 2:29 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hi everyone,

			Loved the Kathie Snow statement AnitaS!

			Great story about Dan & Jack, Jo, of what can
happen out there in the community, how Dan was the connector!  These
experiences do keep you going.

			Inclusion for the elderly - don't always want
it.

			I have been spending much time caring for my
88-yr old mother in law, who has shifted unwillingly to an independent
living unit in a retirement village.  She needs quite a lot of support
and we have some in place, but she really needs hostel care or nursing
home.  We tried to make the transition easier for her from home to ILU.
It would have been great for her to stay in her own home and we have
been supporting her to do so for nine years plus, but her vulnerability
is such that we had no choice.     Quite a few people she knows in the
village but up to now she doesn't seem to want to mingle anymore than
she has to.  This situation seems to go against all I believe and work
towards for Warren;  Her choice would be her family home - & hide away.
On top of this we have had a mountain of cleaning up to do to get her
house ready for sale.  If anyone has some sage advice I'm happy to
listen.  

			Thinking about getting on Skype myself - let you
know how I go Jo.

			Warm wishes to everyone!

			xo

			AnitaO

				-----Original Message-----
				From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
				Sent: Wednesday, 20 May 2009 10:51 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Wow, I'm worn out thinking about all
that travelling - I hope it'll be for a few weeks.  Yes, it is a small
world and what a great opportunity to catch up with Bruce to maybe get
his reflections.  Go Girl - congratulations Rachel on getting the gig -
I looove Rock n Roll (am I on the right track). 

				I'll get dad to run a copy of the DVD
for you (are you reading this dad?) - not a heap on it but enough to
enjoy and bring back those memories.

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Wednesday, 20 May 2009 7:05 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hello Jo Good to hear you and remember
our time at the Ho Down and of course other moments, How did the film
come out. It would be good to see.
				We are off to Dublin in August and now
not only will Rachel  present a paper she is  being invited to be part
of the demonstration Rock and Roll team. Rather her than me but she
seems happy with the task. there are nine other from the Down Syndrome
group who have been involved for a long time so she has a bit of work to
do. Still they seemed keen to have her after they asked her to go for a
audition. She will also be performing in her two woman show in London so
she is going to be busy. I am looking forward to catching up with
Bridget as she son will both be there, Actually it will be great because
I see from the program that Bruce will also be attending. We might just
have our own little meeting and hear from him how he thought our visit
went. It is a small world really isn't it. We will spend some time with
my sister and her family england and then go to South Africa on the way
home to see my Brothers family.
				You take care Miriam

				
________________________________


				To: familyvoices at inpress.pledgonline.com
				Date: Wed, 20 May 2009 08:10:02 +0800
				From:
familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Thanks Miriam, it's lovely to hear from
you.  When are you off on your trip - must be coming up fast now.  Hope
all is well with you and the family,

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Monday, 18 May 2009 7:46 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hi Jo I loved your happy weekend story.
and the glimpse of you in your home. I hope the education stuff gets
better for you, sadly it is such a long hard journey. You take care my
warmest wishes  Miriam 
				 
				> To:
familyvoices at inpress.pledgonline.com
				> Date: Sun, 17 May 2009 18:48:14 +0800
				> From:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Everyone, 
				> 
				> It is 5pm West Aussie time and I have
been sitting here with a loooovely
				> glass of Cab/Sav catching up on the
conversation on FV learning from one of
				> my favourite sources. 
				> 
				> I am feeling pleasantly tired after
being away to a Velor Microboard Weekend
				> at Fairbridge (just north of Pinjarra)
with another amazing group of people
				> from all over the state learning more
about inclusion and how to invite
				> others to be an integral part of our
sons life. While I was learning this
				> stuff Dan was out having fun on the
flying fox, abseiling, bush walking etc
				> supported by new friends.....
				> 
				> Would like to share this story from
the weekend, Dan and a young man, Jack
				> connected with one another on
Saturday, I only discovered the connection
				> this morning when Jack walked by at
breakfast and I saw Dan's arm shoot up
				> to give him a 'high five', Jack
stopped, said good morning, how are you
				> mate, had a bit more of a chat and
went off to have brekky. The abseiling
				> was happening after breakfast and
after some discussion with the Coordinator
				> she approached Jack to ask if he would
take Dan abseiling which he readily
				> agreed to. When lunch time came
around, Dan arrived back at the hall with
				> Steve, minus Jack - I was wondering if
everything went ok and decided to
				> follow up with him when I could. 15
minutes later he came in and sat down,
				> I thanked him for helping Dan out and
he said "it's me that will be thanking
				> Dan", he explained that he had never
abseiled before so prior to taking Dan
				> up he did a dummy run on his own, then
he went up and down with Dan. After
				> everyone had had their turn the
instructor offered Jack a weekend job, Jack
				> said he didn't know much about
abseiling and the response was "if you can
				> support someone the way you did with
Dan, talking to him all the way up and
				> down, helping him out where he needed,
you know everything you need to
				> know". Jack was stoked (he's 16) and I
was in awe of him being so
				> appreciative of Dan who helped him get
the job. One day I'll stop being
				> surprised but right now I still get
caught out with how there are others who
				> are so appreciative of our kids. Just
wanted to share a warm and fuzzy -
				> they help me keep going with the other
hard slog stuff we have to face -
				> thank goodness for these little gems.
				> 
				> I have some education stuff happening
(negative) but don't want to go into
				> it just now after my enjoyable weekend
so will ask for some comments at
				> another time when I'm ready to tackle
it.......wish it could be never!
				> Jo
				> 
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, 17 May 2009 2:39 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> HI Gina
				> Just been skyping with Anita. Wow is
that scary I think the rule should be
				> only head for camera.
				> 
				> I have also just gone to itunes and
downloaded away the podcasts?? What are
				> they?
				> 
				> Is anyone interested in skypeing?
				> Cheers Jane
				> 
				> 
				> Jane Warner/Hudson
				> 
				> 07 46714737
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, May 17, 2009 1:32 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Jane
				> 
				> Bearing in mind I haven't got P2Go at
this stage but this is only as I
				> understand it...
				> 
				> Q/ With the prolquo when I go into
"about me" Can I put in stuff where
				> it
				> says "I go to the .....school?" ie
Goondiwindi. If it is yes I will
				> then
				> work out how, I just don't want to be
trying to work something out that
				> I
				> cant do.
				> 
				> I believe you can add in your own
words etc, you might have to fiddle
				> with the spelling, punctuation etc of
Goondawindi to get the voice to
				> say it well enough for you to be happy
with, ie it might need some
				> phonetic spelling, hyphens etc to work
it out. In time you will work
				> out how to spell things to have the
'real voice' pronounce it well
				> enough.
				> 
				> Q/Which manual or directions do you
think are the simplest for
				> programming?
				> 
				> Have you joined the P2Go group - there
are some great parents who have
				> been beta testing it on that group and
they are very keen to help out.
				> I posted the link a while back, but
can resend if you need it. These
				> are people actually using it for their
kids now, so would be great to
				> post your specific questions to them.
The developers are very hands on
				> too.
				> 
				> 
				> Q/ Do you think it would be worth my
while to get a Iphone for me? (I
				> saw
				> one on ebay that looked ok), Sarah
have the Ipod so that I can learn to
				> use
				> it while she is. At some stage I would
like her to use the phone just
				> not
				> sure if this is the right tool. Ie my
thought for her was maybe a phone
				> with video connection to me so she can
learn mum rings, I see her face
				> and
				> from their we learn answering and talk
back.
				> 
				> We haven't got the iPhone yet, but
this was our plan... Shawn is off
				> contract with his phone at the moment
having changed jobs and now for
				> the first time in his working career
not provided a phone (shame about
				> that). So he was going to lock into a
$49 or $59 capped plan to curb
				> his costs each month. Optus are
currently offering iPhone plans with a
				> 8gig phone at this price so we believe
we could sign up to one of those
				> plans, bring his number across to that
plan, then move the sim card to
				> his Samsung phone an then just use the
iPhone for Mac without a sim card
				> (or buy a cheap prepaid plan if we
felt it was good as an emergency
				> phone). At least that way I could
start developing options for its use,
				> start storing things I would normally
store on a stepped switch
				> communicator and so on.
				> 
				> I still need to find a way to switch
adapt it, no-one has worked that
				> out yet - but I will keep trying. 
				> 
				> You would just have to check out the
costs/capabilities of video calls
				> if that was a goal - I don't know much
about that. Maybe skype is
				> available to use via the internet
connections rather than phone calls -
				> not sure on that one.
				> 
				> 
				> In saying all this she is very good
with the ipod I put hi five and
				> wiggles
				> on yesterday and it is a hit.
				> 
				> There are also some great free PIXAR
short films on iTunes you can
				> download - Mac loves them. Also check
out the podcasts that are out
				> there. We found heaps of stories for
Mac on podcasts (all free). Mac
				> has a very eclectic selection on his
ipod. Jason Mraz is a big hit, he
				> likes to sing along, but he also likes
some albums called 'Little
				> Voices' which is kids singing more
contemporary and classic songs. He
				> seems to have ended his Tom Jones
phase (now that the 'beer ad' is off
				> tv), still partial to some Kiss from
time to time. He is a funny kid
				> really - he would be happy to have
some big political speeches on there,
				> loves a big political statement on the
news, he readily 'glaarrs' along
				> with the speaker - we are not sure
whether he is 'for or agin' Mr Rudd
				> yet, but he certainly pipes up
everytime Kevvy is banging on about stuff
				> on tv or radio.
				> 
				> I am also going to see what I can
learn about the Database program Bento
				> which can be used on the iPhone and
see if a PODD style system could be
				> converted into that format. Just
trying to find some workshops on PODD
				> systems somewhere in the country at
the moment so I can learn more.
				> 
				> Sorry more questions, where is the
best place to get easy step by step
				> instructions to use ipod ie move
programs on front page.
				> 
				> Check out their website at
http://www.proloquo2go.com/
				> <http://www.proloquo2go.com/> 
				> 
				> 
				> Can I download a dvd to ipod direct or
does everything have to go thru
				> itunes?
				> 
				> I think you can just convert a DVD
into ipod formats - there would be
				> software to do that depending on
whether you are on PC or Mac. Some
				> might be freeware, some cheap, some
expensive. Again, since I haven't
				> got the touch yet I can't be sure. 
				> 
				> Thanks Gina. You are such a
inspirtation, I would love to get you to do
				> a
				> workshop for want of a better word in
Goondiwindi. The young families I
				> work with could learn so much from
you.
				> Anytime :-)
				> 
				> Just a thought which I am sure you
have covered, when you talk with the
				> school do you have someone beside you?
> 
				> I have my husband sitting beside me
for all these meetings. I would not
				> go in there alone for love nor money.
We sometimes don't think it is
				> fair on those we meet with. Shawn and
I have been together now for 21
				> years and know exactly where one
another sits on issues so we can play
				> the "good cop/bad cop" roles pretty
well, and where we know it is
				> unfair, is that we switch mid meeting
if it is needed. Because Shawn
				> has been doing so much study on
disability representation in the Media
				> etc he is great because he can just
spout stuff, but also because he is
				> a journalist he is trained to
question, so he turns their questions
				> round back at them - so we know we
don't really play fair. We also don'
				> t go in for all the 'guilt' stuff we
are meant to - guilt is soooo
				> over-rated :-). For example there are
kids at the school who have been
				> denied access to other schools because
they have 'behavioural and/or
				> emotional type issues' (I know,
shouldn't happen, shouldn't be denied
				> access anywhere, but it does) so our
school does take them with open
				> arms, but these families are then
sooooo grateful their kid has been
				> accepted they are not going to risk
making waves and subsequently they
				> have been forced into this position of
having to feel grateful and/or
				> disempowered by the system. So, when
you don't do the guilt thing, I
				> guess it becomes a bit confronting for
'the system'.
				> 
				> Hope it helps
				> 
				> Feel free to contact me anytime if you
think I can be useful. Mac's
				> birthday is in June - he might get his
iPhone then. So excessive
				> providing such a thing to a 6yo but I
honestly think it has the
				> potential to be such a fab tool for
him I will just have to cope with
				> being an over indulgent parent (guilt
free of course).
				> 
				> Gina
				> 
				> 
				> 
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From familyvoices at inpress.pledgonline.com  Tue Jun  2 01:37:41 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 2 Jun 2009 16:37:41 +0800
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <7sroog$bnsmda@ipmail05.adl2.internode.on.net>
References: <001d01c9e298$166e17f0$434a47d0$@net.au>
	<7sroog$bnsmda@ipmail05.adl2.internode.on.net>
Message-ID: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au>

Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.

 

My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:

 

1.      Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.

Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.

2.      The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.

3.      Does Mac have epilepsy? There are some other/different strategies if
this is the case, perhaps.

 

I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.

 

Jaquie 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Yes please, I am always keen to hear anything on sleep.

 

I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.

 

There are a few reasons we think Mac doesn?t sleep including any of the
following:

-        cortical vision blindness meaning he may not be getting enough
daylight brain messaging to inhibit the release of melatonin during the day
then there isn?t a good enough supply to get him through the night

-        same deal with the production of serotonin ie not enough to keep
him asleep through the night.

-        he is a nose breather so any nasal congestion causes him to get
very stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.

-        he is so incredibly tight in his muscles he turns into a pretzel
and is totally uncomfortable after a sleep stint of three-four hours no
matter what position you put him in.

-        he is naughty ? he cries for attention and is totally devastated
until you touch or speak to him, then he grins the biggest naughtiest grin ?
ugh  It has improved however, he used to poke his tongue out and make
himself gag and then projectile vomit for attention until we managed to
remove the projectile vomiting out of his ?list of talents?.

-        he used to get very stressed by the dark and quiet.  He used to
only cope if the lights were on and the tv on ? we have managed to wean him
out of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.

-        He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.

-        On the nights we have used valergan he has slept all night and some
nights only being rolled in the early hours of the morning but not being any
more uncomfortable when he wakes up, so not sure what that tells us.  We
wondered whether a memory foam mattress or a water bed could be beneficial
for him.

 

As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.

 

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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

?       Used by a wide variety of people of all ages, gender, ethnicity and
capacity

?       Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)

?       They live there by choice

?       They can come and go as they choose

?       They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)

?       They can make unquestioned risky decisions

?       They have control over their financial arrangements/budget

?       They can choose who they want to live with and be friends with

?       They can choose their recreational activities

?       They choose where, when and how they work

?       They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 

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SPAMfighter has removed 1532 of my spam emails to date.
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From familyvoices at inpress.pledgonline.com  Tue Jun  2 04:29:51 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 2 Jun 2009 21:29:51 +1000
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au>
Message-ID: <7sroog$bokpr0@ipmail05.adl2.internode.on.net>

Jaquie
 
Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  
 
We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  
 
We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).
 
The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.
 
Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  
 
We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.
 
Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)
 
Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!
 
One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.
 
Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.
 
Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  
 
Cheers
Gina
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.
 
My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:
 
1.       Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.
Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.
2.       The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.
3.       Does Mac have epilepsy? There are some other/different strategies
if this is the case, perhaps.
 
I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.
 
Jaquie 
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Yes please, I am always keen to hear anything on sleep.
 
I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.
 
There are a few reasons we think Mac doesn?t sleep including any of the
following:
-          cortical vision blindness meaning he may not be getting enough
daylight brain messaging to inhibit the release of melatonin during the day
then there isn?t a good enough supply to get him through the night
-          same deal with the production of serotonin ie not enough to keep
him asleep through the night.
-          he is a nose breather so any nasal congestion causes him to get
very stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.
-          he is so incredibly tight in his muscles he turns into a pretzel
and is totally uncomfortable after a sleep stint of three-four hours no
matter what position you put him in.
-          he is naughty ? he cries for attention and is totally devastated
until you touch or speak to him, then he grins the biggest naughtiest grin ?
ugh  It has improved however, he used to poke his tongue out and make
himself gag and then projectile vomit for attention until we managed to
remove the projectile vomiting out of his ?list of talents?.
-          he used to get very stressed by the dark and quiet.  He used to
only cope if the lights were on and the tv on ? we have managed to wean him
out of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.
-          He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.
-          On the nights we have used valergan he has slept all night and
some nights only being rolled in the early hours of the morning but not
being any more uncomfortable when he wakes up, so not sure what that tells
us.  We wondered whether a memory foam mattress or a water bed could be
beneficial for him.
 
As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.
 
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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep
 
Hi Gina, and folks
 
I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!
 
Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Catherine & Meg
 
Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits

 
And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.
 
BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.
 
We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.
 
So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.
 
Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  
 
Cheers All
 
Gina
 
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Hi there, 
Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 
 
This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....
 
Response to contemporary standards claim (2)
Characteristics of village style accommodation for people without
disabilities 
*         Used by a wide variety of people of all ages, gender, ethnicity
and capacity
*         Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)
*         They live there by choice
*         They can come and go as they choose
*         They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)
*         They can make unquestioned risky decisions
*         They have control over their financial arrangements/budget
*         They can choose who they want to live with and be friends with
*         They can choose their recreational activities
*         They choose where, when and how they work
*         They can move out when they choose.
 
(This slide is courtesy of Anne Elysee)
 
 
Catherine
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Libby
I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  
 
I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.
 
Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.
 
Cheers
Gina
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.
 
Anywho
 
It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like
 
 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved
 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 
 - wanting to connect to other families interested in governing and running
their own supports.
 - working on valued roles in general
 - teaching others. Speaking at conferences and lectures and assisting
others to learn.
 
and so on
 
I think what I'm saying is that
 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.
 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.
 
All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 
 
Libby 
 
  _____  

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We are a community of 6 million users fighting spam.
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The Professional version does not have this message.
 
  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
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SPAMfighter has removed 1532 of my spam emails to date.
The Professional version does not have this message.
 
  _____  

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  _____  

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From familyvoices at inpress.pledgonline.com  Tue Jun  2 15:26:53 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Wed, 3 Jun 2009 08:26:53 +1000
Subject: FV: civil society org
In-Reply-To: <7sroog$bokpr0@ipmail05.adl2.internode.on.net>
Message-ID: <7sbeau$avc6im@ipmail01.adl6.internode.on.net>

Hi Guys
Just wondering who this group is, what the background of them is.  
http://www.civilsociety.org.au/National_Update0609.htm#Social_Inclusion
 
I recognize Vern Hughes' name as a long time advocate/commenter but wasn't
where his org sits in the big picture of change/respect etc by those of you
working for advocacy organizations or who have been involved in this area
for some time.  
 
I am not sure how I stumbled upon the website - think it was when I was
looking at different definitions etc of what social inclusion is/means while
trawling the internet at some stage.
 
There are some interesting sounding events eg the natural neighborhoods,
real communities conference later this month in Melbourne and another in
Brisbane later in the year.
 
 
Cheers 
Gina

  _____  

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From familyvoices at inpress.pledgonline.com  Wed Jun  3 17:17:08 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Thu, 4 Jun 2009 10:17:08 +1000
Subject: FV: techno information
In-Reply-To: <001501c9e30f$c1e90be0$45bb23a0$@com.au>
References: <000f01c9dc58$47148650$c600a8c0@ANITA><A301392811DD4BDA8E6B17150A879123@D8XYGK1S><19EFFF8E-FEAF-408C-A01F-91F9751D5238@aapt.net.au><65C85FB807EB430A82135C087DF32700@D8XYGK1S><172F386E13044A428262A61380719B82DA00EC@jcmail><002a01c9dd91$87a12090$96e361b0$@net.au><AB5829E3D36F4964B3126F09371CAE64@SWEENEYDESKTOP><172F386E13044A428262A61380719B82DA02B0@jcmail>	<1d4342460905280625p15c526d9tb69f4243274ae476@mail.gmail.com><1918AFBC616E4B80B13E4F5D2943796C@dell91>	<001f01c9e0ec$96296a10$c27c3e30$@com><55F2F2E5867848349F430013C155CA68@dell91>
	<001501c9e30f$c1e90be0$45bb23a0$@com.au>
Message-ID: <EA995C5B63CE40909DA2EAC0CD34D195@dell91>

Hi Helen
Great to hear from you too.  I too miss the chats.  I think I know what you
are saying and will do that this weekend when I can get to the computer.  If
you do the manual sync thing does that also stop it from not taking off
photos.  I need to have a real play with it and the proloque2go.  I have 82
emails from the support group with it which is just too much I cant even
open the folder.

I would love to see you again soon and have a chance to do the glass of red
by the fire.  Take care too. 
How is Shari? Are you on face book.
Love Jane


Jane Warner/Hudson
 
07 46714737
 
-----Original Message-----
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, June 02, 2009 9:22 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: techno information

Hi Jane,
Hope you are really well. I don't know if you have an answer to this but you
need to connect it to your computer and then choose (Manually sync in setup)
If you can't find it I will go through the process again at home and step
you through it.
Miss our early morning - late night chats - Take care
Cheers Helen

Helen Durbidge
Property Sales
Kirkland Real Estate
9/8 Bowra St
Urunga NSW 2455
Email - helen at kirklandrealestate.com.au
www.kirklandrealestate.com.au
Phone: 66556167 or 0401805298


-----Original Message-----
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: techno information


Hello all

Can anyone tell me how I download off two itunes sites?  I have registered
Sarah's ipod (I think) to a I tunes site and my son has a itunes as well.
When I go to his and download his music it wipes out the stuff I have set up
on other.

Still haven't worked out proloque2go program.

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: Saturday, May 30, 2009 4:05 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Facilitated communicaton

It would do this and sort them but you have to change the header
(subject) of each positing to keep the thread the same.

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Friday, 29 May 2009 7:35 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Facilitated communicaton

 

Hi all

 

Brenda I have just come in have not really caught up with the thread but
am also interested in the conversations re FC.  I have to go away this
weekend, away from family voices  I am now printing off madly to show
some of the wonderful words of wisdom.

 

Right now I have a bit of headache so bit fuzzy but I have a thought in
my head that we are not tracking the conversations so well.  Is there
anyone out there with out a fuzzy head who can think of a simple way to
have threads in line???

Gina I have done the rule thing which is great another thing you have
taught me but could we do something like that with subjects of
conversations.

 

Family voices is one of the most powerful things in my world at the
moment, the sharing, knowledge, understanding is priceless.

Hug to all

 

Ps Hearing what you are saying Meg.  Was the house offer your new one or
old one.  Keep riding that rollercoaster girlfriend and hang on!!!

 

Jane Warner/Hudson

 

07 46714737

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Thursday, May 28, 2009 11:26 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

Hallo everyone,

 

I am a parent of a son who had a head injury many years ago and did not
come up through the child raising times and so I find your conversation
very enlightening.  I now have a problem. I am travelling in Canada,
using other people's computers, and wanted to forward the conversations
about Facilitated Communication to someone I met this week. However,
somehow I lost it. Would someone please forward those particular
conversations to me again so that I may send them on to her.

 

Regards,

 

Brenda

On Wed, May 27, 2009 at 8:10 PM, Family Voices
<familyvoices at inpress.pledgonline.com> wrote:

Another aspect of this we have faced is the absolutely IMPLICIT
'dependence learning' that is done through the very act of having
support workers. This is so deep in Matthew, and I feel quite certain at
this stage that this is an inherent aspect of the 'support worker'
model. Matthew turns to the person he is with and puts his hand to his
mouth (a morph of the drink/eat sign). This sign is a decision-making
sign and one that he initiates. It's fabulous that he initiates it
(decision-making in practice) but it quickly becomes a handing-over of
power (that he also initiates). It's also the fact that he does it in
the first place. Depending on the context, it variously means

 

 - tell me what is happening next

 - where are we going

 - I want something

 - who is coming after you bugger off (and are they going to be more
exciting that you my boring sister?!)

 

As you can see, depending on how you respond you can very easily become
the locus of control.

 

Why doesn't Matthew make a decision  - eg I want a drink - a go initiate
it? He's capable of this with assistance (this was meant as a
rhetorical/theoretical question). Instead he's learned so subtely and
powerfully over the years that the people who come in to his home are
responsible for this.

 

I'm using this as an example, not really looking for suggestions here
about others ways Matthew could communicate - we're really working on
this.

 

I think what I wanted to raise are actually issues around involvement of
paid people/unpaid people - I have seen this as another topic of
discussion here

 

So much of what families/individuals are conditioned around is the need
for paid support. Families (including ours), leap to it. However we
baulk (including ours), are fearful, worried, don't think it could be
possible etc around the unpaid stuff. We're taught (professional gift
model) that this is what is needed. I look at the self-managed community
participation options in NSW for example, where the work of families
seems very quickly to be around hiring support workers to assist the
young person in their post-school pursuits. It becomes like a vicious
cycle - the more we get caught up in managing the paid system the easier
it is to stay away from the (harder) work of the unpaid stuff. 

 

I have found in our accommodation agreement/arrangement with Matthew's
service provider that we too get driven by this. His budget is there to
use to hire support workers isn't it? 

 

It was therefore very interesting to hear Bruce Uditsky from Alberta,
Canada talk at Family Advocacy conference a couple of years ago about
this - their response has been to work on a number of projects that seek
to systemically develop more natural supports. For example their
partnership with Rotary where support on the job is built through
co-workers.

 

My example above is to talk about the potentially powerful impact of
this on people and their decision-making capacity. There are many things
we can do to help put power back into Matthew's hands, but many of these
are really just fiddling, cos they don't get at the root, which is the
very presence of the person whose job it is 'to help' (no matter how
empowering they are in the practice of this role).

 

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices

Sent: Wednesday, 27 May 2009 9:51 PM 


To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

The response we are accustomed to is "I don't know" when she absolutely
does know.  I think this comes from a place of wanting to please, not
wanting to be to told no and also wanting to get the answer right.
Depending on the complexity of the question we now give her ridiculous
options like cat food on toast to push her to articulate her choice or
reframing the question/breaking it down in sequential order to assist
understanding and then decision making.  We are also very aware that if
Jos makes a clear choice that we honor that (as much as we can,
education about good food choices or bed times if very tired etc) even
if it really puts us out otherwise her choice making is really
redundant, leading to more I don't know.  The other aspect is that we
know her well and understand her reluctance to make decisions however if
she were in a service world it would simply move on and make decisions
on her behalf that suited the service not her as a person.  We are
really keen to encourage her independent decision making as she will
need it in the future to maintain her personal independence and protect
her form being, excuse me, fucked around.  It's interesting that what is
a big ask for Jos would be just a natural occurrence for the other kids.
Todd and I are the moderators of this and we try to always be mindful
that our power over her life is much more profound in good ways and also
in not so good if were not careful to keep her interests at the
forefront of our minds.

 

Megs

 

Offer on house accepted, meeting with new school held.still thinking,
geriatric dog survived kennel experience (just), eldest child home from
England tomorrow, middle child has new work placement at child care
centre, youngest child 15 on Friday, just like everyone else ...busy,
and it's now winter YUCK !!!!!

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Tuesday, 26 May 2009 9:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

This is all so true...we all fill in the gaps of what we hear with our
own assumptions. We have a terrific service dude here in Perth who works
with the vela families who always reminds us that everyone's default
answer is always 'no'...until we have enough information.

 

One of eli's friends years ago used to routinely refuse to sleepover. I
assumed, in my wounded heart maternal fashion, for about a year that he
said no because he didn't really want to be around eli that much because
he was too weird. When i got around to asking him, he said...i'm
planning to live with eli when i move out of home but i don't think i am
ready to look after him all by myself yet. This young man was 13`at the
time, and for some reason he had assumed that a sleepover meant me and
Darryl wouldn't be here! We've had many sleepovers since and even now, 4
years later, some. Weekends liam almost lives here.

 

One strategy we've been using with one family is to build up an image of
adult life using favourite movies and tv shows. We have a young woman at
present with some challenges around adult behaviour, and are using her
favourite tv series 'Friends' to help her to identify adult vs childish
ways of being. So far it has been very successful. I think this process
of developing an adult identity is comlex for all of us.

 

We've had some awesome help with this from the international men's group
Mankind Project who eli is in the process of joining. I recommend them
from what i have seen so far to anyone with sons who are transitioning
into an adult male identity, but they have been profound and magnificent
in their welcome and inclusion of eli so far. Check out the website:

 

http://www.mkp.org/ 

 

Jaquie

 

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:31 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

That's really interesting Jill and has really made me think! Quite a
ground breaking thing - so simple yet so easily missed. This has really
made me think about my language and how we assume so much in our
conversations in life

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:49 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

Hi Jill, Interesting that the wording was the hold back. I did ask
Lauren if she was lonely and was our home too big for her to manage. But
she just looked at me vaguely and said no. Maybe I should word it
differently. I don't want her to feel she HAS to move away from her
security either. It might take years for us to get to a place where she
lives independently of us, but I feel we have started her thinking she
can do it.

When are you going to South America Jill?

Maureen

	----- Original Message ----- 

	From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com>  

	To: familyvoices at inpress.pledgonline.com 

	Sent: Monday, May 25, 2009 11:37 AM

	Subject: Re: FV: What is inclusion?

	 

	Hi Maureen 

	Great news about Lauren's 'holiday'!  I can relate to it so well
as it was the same for me with Ben when I returned from Canada.    Apart
from his solo experience whilst I was in Canada, I eventually worked out
what was adding to his concern re living independently.  I used to say
to him "wouldn't you like to live by yourself?" or something similar and
just lately twigged that he was taking this literally and thinking that
he would be just in the house by himself with nothing else happening!
When I thought to add that he would still go to work, go out with
friends, visit me etc, his whole attitude changed.  Silly me, thought he
was a mind reader!  Ben has now agreed to having a look at some places
for himself, so we will gradually do some open inspections.  More
holidays on the horizon for you!

	Regards

	Jill

	 

	 

	Hello everyone,

	Life has been busy here and I have been reading all the
contributions and not participating. Just reading..

	"Moving Mum"can be as stressful as thinking about moving our
young ones into places of their own. As I have a 91 y.o. Mum who lives
in an retirement apartment and is very independent, but she can't drive
or attend medical appointments without some assistance and so I (and
others) are always there for her. We are a huge family, and we love
sharing the responsibility of Mum, but for others like Anita, who are
"IT" - the problems can't be shared - there is a huge responsibility.

	There is such a close parallel between disability and aged care.
I often see the same issues arise between Mum and Lauren. Age is not the
barrier!

	 

	My good story for the day is..

	Murdoch and I went to Hobart for three nights of respite and
golf.. We ate too much and drank too much and went to the casino and the
horse track and generally enjoyed ourselves.

	All this was possible because we "bit the bullet"and left Lauren
at home - ALONE!!

	I had prepared a few meals in advance. She ordered a Pizza to
share with a friend who came over and stayed on Saturday night. They
took themselves out to brunch on Sunday morning and she managed her life
and recreation very well without us.. We are delighted to tell you we
are

	very excited about her independence, but more so, she was so
delighted to see us!!

	 

	Aren't we lucky? To be greeted so lovingly and warmly when we
drove in the garage and her little laughing face was at the door. My
other kids never greet me so welcomingly! She really loves us..That is
so nice. It is so evident even though she just can't bring herself to
mouth the words"I love you Mum and Dad"- We have blessed evidence and
that is so nice for us!

	 

	I hope you are all well

	Maureen

	 

		----- Original Message -----

		From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com> 

		To: familyvoices at inpress.pledgonline.com

		Sent: Sunday, May 24, 2009 8:13 PM

		Subject: Re: FV: What is inclusion?

		 

		Thanks Jaquie . . . I appreciate your thoughts  - I'm
off on a holiday for two weeks so hopefully I'll come back with a
peaceful and clearer mind!

		 

		Cheers!

		J

		Anita O'Brien

		6 Bogong Court

		Doncaster East 3109

		Ph: 03 9841 8492

		Mobile: 0416 064 045

		email: anita.obrien at optusnet.com.au
<mailto:anita.obrien at optusnet.com.au> 

			-----Original Message-----
			From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
			Sent: Sunday, 24 May 2009 5:28 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hey Anita

			I just went through this myself.

			I don't really have any sage advice, other than
to say that the microboard model has been extended in North America to
successfully cover situations like this one..ie so folks can be
supported at home. That probably doesn't help you directly as the model
is still so much in development, but is there a way you could use the
circle of friends idea to provide support to your mum in the new
location....these issues we face with our kids are the same we all face
at the times we most need support. Even if your mum needs to live in the
ILU or somewhere with more supported, person centred planning can still
help to make the service provision and her life as close as possible to
what she wants and needs. Also Essential Lifestyle Planning is really
good in this situation.

			I feel for you....it seems a cruel thing that us
parents seem to commonly have to deal with our kids and our parents
transitions at the same time.

			Let me know when you have downloaded Skype!

			Jaquie

			From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
			Sent: Thursday, 21 May 2009 2:29 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hi everyone,

			Loved the Kathie Snow statement AnitaS!

			Great story about Dan & Jack, Jo, of what can
happen out there in the community, how Dan was the connector!  These
experiences do keep you going.

			Inclusion for the elderly - don't always want
it.

			I have been spending much time caring for my
88-yr old mother in law, who has shifted unwillingly to an independent
living unit in a retirement village.  She needs quite a lot of support
and we have some in place, but she really needs hostel care or nursing
home.  We tried to make the transition easier for her from home to ILU.
It would have been great for her to stay in her own home and we have
been supporting her to do so for nine years plus, but her vulnerability
is such that we had no choice.     Quite a few people she knows in the
village but up to now she doesn't seem to want to mingle anymore than
she has to.  This situation seems to go against all I believe and work
towards for Warren;  Her choice would be her family home - & hide away.
On top of this we have had a mountain of cleaning up to do to get her
house ready for sale.  If anyone has some sage advice I'm happy to
listen.  

			Thinking about getting on Skype myself - let you
know how I go Jo.

			Warm wishes to everyone!

			xo

			AnitaO

				-----Original Message-----
				From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
				Sent: Wednesday, 20 May 2009 10:51 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Wow, I'm worn out thinking about all
that travelling - I hope it'll be for a few weeks.  Yes, it is a small
world and what a great opportunity to catch up with Bruce to maybe get
his reflections.  Go Girl - congratulations Rachel on getting the gig -
I looove Rock n Roll (am I on the right track). 

				I'll get dad to run a copy of the DVD
for you (are you reading this dad?) - not a heap on it but enough to
enjoy and bring back those memories.

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Wednesday, 20 May 2009 7:05 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hello Jo Good to hear you and remember
our time at the Ho Down and of course other moments, How did the film
come out. It would be good to see.
				We are off to Dublin in August and now
not only will Rachel  present a paper she is  being invited to be part
of the demonstration Rock and Roll team. Rather her than me but she
seems happy with the task. there are nine other from the Down Syndrome
group who have been involved for a long time so she has a bit of work to
do. Still they seemed keen to have her after they asked her to go for a
audition. She will also be performing in her two woman show in London so
she is going to be busy. I am looking forward to catching up with
Bridget as she son will both be there, Actually it will be great because
I see from the program that Bruce will also be attending. We might just
have our own little meeting and hear from him how he thought our visit
went. It is a small world really isn't it. We will spend some time with
my sister and her family england and then go to South Africa on the way
home to see my Brothers family.
				You take care Miriam

				
________________________________


				To: familyvoices at inpress.pledgonline.com
				Date: Wed, 20 May 2009 08:10:02 +0800
				From:
familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Thanks Miriam, it's lovely to hear from
you.  When are you off on your trip - must be coming up fast now.  Hope
all is well with you and the family,

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Monday, 18 May 2009 7:46 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hi Jo I loved your happy weekend story.
and the glimpse of you in your home. I hope the education stuff gets
better for you, sadly it is such a long hard journey. You take care my
warmest wishes  Miriam 
				 
				> To:
familyvoices at inpress.pledgonline.com
				> Date: Sun, 17 May 2009 18:48:14 +0800
				> From:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Everyone, 
				> 
				> It is 5pm West Aussie time and I have
been sitting here with a loooovely
				> glass of Cab/Sav catching up on the
conversation on FV learning from one of
				> my favourite sources. 
				> 
				> I am feeling pleasantly tired after
being away to a Velor Microboard Weekend
				> at Fairbridge (just north of Pinjarra)
with another amazing group of people
				> from all over the state learning more
about inclusion and how to invite
				> others to be an integral part of our
sons life. While I was learning this
				> stuff Dan was out having fun on the
flying fox, abseiling, bush walking etc
				> supported by new friends.....
				> 
				> Would like to share this story from
the weekend, Dan and a young man, Jack
				> connected with one another on
Saturday, I only discovered the connection
				> this morning when Jack walked by at
breakfast and I saw Dan's arm shoot up
				> to give him a 'high five', Jack
stopped, said good morning, how are you
				> mate, had a bit more of a chat and
went off to have brekky. The abseiling
				> was happening after breakfast and
after some discussion with the Coordinator
				> she approached Jack to ask if he would
take Dan abseiling which he readily
				> agreed to. When lunch time came
around, Dan arrived back at the hall with
				> Steve, minus Jack - I was wondering if
everything went ok and decided to
				> follow up with him when I could. 15
minutes later he came in and sat down,
				> I thanked him for helping Dan out and
he said "it's me that will be thanking
				> Dan", he explained that he had never
abseiled before so prior to taking Dan
				> up he did a dummy run on his own, then
he went up and down with Dan. After
				> everyone had had their turn the
instructor offered Jack a weekend job, Jack
				> said he didn't know much about
abseiling and the response was "if you can
				> support someone the way you did with
Dan, talking to him all the way up and
				> down, helping him out where he needed,
you know everything you need to
				> know". Jack was stoked (he's 16) and I
was in awe of him being so
				> appreciative of Dan who helped him get
the job. One day I'll stop being
				> surprised but right now I still get
caught out with how there are others who
				> are so appreciative of our kids. Just
wanted to share a warm and fuzzy -
				> they help me keep going with the other
hard slog stuff we have to face -
				> thank goodness for these little gems.
				> 
				> I have some education stuff happening
(negative) but don't want to go into
				> it just now after my enjoyable weekend
so will ask for some comments at
				> another time when I'm ready to tackle
it.......wish it could be never!
				> Jo
				> 
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, 17 May 2009 2:39 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> HI Gina
				> Just been skyping with Anita. Wow is
that scary I think the rule should be
				> only head for camera.
				> 
				> I have also just gone to itunes and
downloaded away the podcasts?? What are
				> they?
				> 
				> Is anyone interested in skypeing?
				> Cheers Jane
				> 
				> 
				> Jane Warner/Hudson
				> 
				> 07 46714737
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, May 17, 2009 1:32 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Jane
				> 
				> Bearing in mind I haven't got P2Go at
this stage but this is only as I
				> understand it...
				> 
				> Q/ With the prolquo when I go into
"about me" Can I put in stuff where
				> it
				> says "I go to the .....school?" ie
Goondiwindi. If it is yes I will
				> then
				> work out how, I just don't want to be
trying to work something out that
				> I
				> cant do.
				> 
				> I believe you can add in your own
words etc, you might have to fiddle
				> with the spelling, punctuation etc of
Goondawindi to get the voice to
				> say it well enough for you to be happy
with, ie it might need some
				> phonetic spelling, hyphens etc to work
it out. In time you will work
				> out how to spell things to have the
'real voice' pronounce it well
				> enough.
				> 
				> Q/Which manual or directions do you
think are the simplest for
				> programming?
				> 
				> Have you joined the P2Go group - there
are some great parents who have
				> been beta testing it on that group and
they are very keen to help out.
				> I posted the link a while back, but
can resend if you need it. These
				> are people actually using it for their
kids now, so would be great to
				> post your specific questions to them.
The developers are very hands on
				> too.
				> 
				> 
				> Q/ Do you think it would be worth my
while to get a Iphone for me? (I
				> saw
				> one on ebay that looked ok), Sarah
have the Ipod so that I can learn to
				> use
				> it while she is. At some stage I would
like her to use the phone just
				> not
				> sure if this is the right tool. Ie my
thought for her was maybe a phone
				> with video connection to me so she can
learn mum rings, I see her face
				> and
				> from their we learn answering and talk
back.
				> 
				> We haven't got the iPhone yet, but
this was our plan... Shawn is off
				> contract with his phone at the moment
having changed jobs and now for
				> the first time in his working career
not provided a phone (shame about
				> that). So he was going to lock into a
$49 or $59 capped plan to curb
				> his costs each month. Optus are
currently offering iPhone plans with a
				> 8gig phone at this price so we believe
we could sign up to one of those
				> plans, bring his number across to that
plan, then move the sim card to
				> his Samsung phone an then just use the
iPhone for Mac without a sim card
				> (or buy a cheap prepaid plan if we
felt it was good as an emergency
				> phone). At least that way I could
start developing options for its use,
				> start storing things I would normally
store on a stepped switch
				> communicator and so on.
				> 
				> I still need to find a way to switch
adapt it, no-one has worked that
				> out yet - but I will keep trying. 
				> 
				> You would just have to check out the
costs/capabilities of video calls
				> if that was a goal - I don't know much
about that. Maybe skype is
				> available to use via the internet
connections rather than phone calls -
				> not sure on that one.
				> 
				> 
				> In saying all this she is very good
with the ipod I put hi five and
				> wiggles
				> on yesterday and it is a hit.
				> 
				> There are also some great free PIXAR
short films on iTunes you can
				> download - Mac loves them. Also check
out the podcasts that are out
				> there. We found heaps of stories for
Mac on podcasts (all free). Mac
				> has a very eclectic selection on his
ipod. Jason Mraz is a big hit, he
				> likes to sing along, but he also likes
some albums called 'Little
				> Voices' which is kids singing more
contemporary and classic songs. He
				> seems to have ended his Tom Jones
phase (now that the 'beer ad' is off
				> tv), still partial to some Kiss from
time to time. He is a funny kid
				> really - he would be happy to have
some big political speeches on there,
				> loves a big political statement on the
news, he readily 'glaarrs' along
				> with the speaker - we are not sure
whether he is 'for or agin' Mr Rudd
				> yet, but he certainly pipes up
everytime Kevvy is banging on about stuff
				> on tv or radio.
				> 
				> I am also going to see what I can
learn about the Database program Bento
				> which can be used on the iPhone and
see if a PODD style system could be
				> converted into that format. Just
trying to find some workshops on PODD
				> systems somewhere in the country at
the moment so I can learn more.
				> 
				> Sorry more questions, where is the
best place to get easy step by step
				> instructions to use ipod ie move
programs on front page.
				> 
				> Check out their website at
http://www.proloquo2go.com/
				> <http://www.proloquo2go.com/> 
				> 
				> 
				> Can I download a dvd to ipod direct or
does everything have to go thru
				> itunes?
				> 
				> I think you can just convert a DVD
into ipod formats - there would be
				> software to do that depending on
whether you are on PC or Mac. Some
				> might be freeware, some cheap, some
expensive. Again, since I haven't
				> got the touch yet I can't be sure. 
				> 
				> Thanks Gina. You are such a
inspirtation, I would love to get you to do
				> a
				> workshop for want of a better word in
Goondiwindi. The young families I
				> work with could learn so much from
you.
				> Anytime :-)
				> 
				> Just a thought which I am sure you
have covered, when you talk with the
				> school do you have someone beside you?
> 
				> I have my husband sitting beside me
for all these meetings. I would not
				> go in there alone for love nor money.
We sometimes don't think it is
				> fair on those we meet with. Shawn and
I have been together now for 21
				> years and know exactly where one
another sits on issues so we can play
				> the "good cop/bad cop" roles pretty
well, and where we know it is
				> unfair, is that we switch mid meeting
if it is needed. Because Shawn
				> has been doing so much study on
disability representation in the Media
				> etc he is great because he can just
spout stuff, but also because he is
				> a journalist he is trained to
question, so he turns their questions
				> round back at them - so we know we
don't really play fair. We also don'
				> t go in for all the 'guilt' stuff we
are meant to - guilt is soooo
				> over-rated :-). For example there are
kids at the school who have been
				> denied access to other schools because
they have 'behavioural and/or
				> emotional type issues' (I know,
shouldn't happen, shouldn't be denied
				> access anywhere, but it does) so our
school does take them with open
				> arms, but these families are then
sooooo grateful their kid has been
				> accepted they are not going to risk
making waves and subsequently they
				> have been forced into this position of
having to feel grateful and/or
				> disempowered by the system. So, when
you don't do the guilt thing, I
				> guess it becomes a bit confronting for
'the system'.
				> 
				> Hope it helps
				> 
				> Feel free to contact me anytime if you
think I can be useful. Mac's
				> birthday is in June - he might get his
iPhone then. So excessive
				> providing such a thing to a 6yo but I
honestly think it has the
				> potential to be such a fab tool for
him I will just have to cope with
				> being an over indulgent parent (guilt
free of course).
				> 
				> Gina
				> 
				> 
				> 
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From familyvoices at inpress.pledgonline.com  Thu Jun  4 16:39:42 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 09:39:42 +1000
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <7sroog$bokpr0@ipmail05.adl2.internode.on.net>
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au>
	<7sroog$bokpr0@ipmail05.adl2.internode.on.net>
Message-ID: <D2A1A9903B5E4FCCB4947CB39C217D47@dell91>

Hi Gina

 

Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  

 

Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?

 

I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  

I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha

 

I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.

 

Hang in there I too think you are doing an amazing job and Mac sounds like a
star.

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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  

 

We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  

 

We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).

 

The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.

 

Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  

 

We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.

 

Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)

 

Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!

 

One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.

 

Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.

 

Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  

 

Cheers

Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.

 

My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:

 

1.       Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.

Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.

2.       The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.

3.       Does Mac have epilepsy? There are some other/different strategies
if this is the case, perhaps.

 

I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.

 

Jaquie 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Yes please, I am always keen to hear anything on sleep.

 

I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.

 

There are a few reasons we think Mac doesn?t sleep including any of the
following:

-          cortical vision blindness meaning he may not be getting enough
daylight brain messaging to inhibit the release of melatonin during the day
then there isn?t a good enough supply to get him through the night

-          same deal with the production of serotonin ie not enough to keep
him asleep through the night.

-          he is a nose breather so any nasal congestion causes him to get
very stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.

-          he is so incredibly tight in his muscles he turns into a pretzel
and is totally uncomfortable after a sleep stint of three-four hours no
matter what position you put him in.

-          he is naughty ? he cries for attention and is totally devastated
until you touch or speak to him, then he grins the biggest naughtiest grin ?
ugh  It has improved however, he used to poke his tongue out and make
himself gag and then projectile vomit for attention until we managed to
remove the projectile vomiting out of his ?list of talents?.

-          he used to get very stressed by the dark and quiet.  He used to
only cope if the lights were on and the tv on ? we have managed to wean him
out of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.

-          He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.

-          On the nights we have used valergan he has slept all night and
some nights only being rolled in the early hours of the morning but not
being any more uncomfortable when he wakes up, so not sure what that tells
us.  We wondered whether a memory foam mattress or a water bed could be
beneficial for him.

 

As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.

 

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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie :-)

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

*        Used by a wide variety of people of all ages, gender, ethnicity and
capacity

*        Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)

*        They live there by choice

*        They can come and go as they choose

*        They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)

*        They can make unquestioned risky decisions

*        They have control over their financial arrangements/budget

*        They can choose who they want to live with and be friends with

*        They can choose their recreational activities

*        They choose where, when and how they work

*        They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 

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From familyvoices at inpress.pledgonline.com  Thu Jun  4 17:17:25 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 10:17:25 +1000
Subject: FV: Hi Gina..re Mac and sleep
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>
	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91>
Message-ID: <66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>

HI Jane/Gina
Yes Mac does sound like a star and so do you both!
I just wish I had all this support and information when Lauren was little. She will be 25 on Sunday.
Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch pushed her in the pram around the suburbs so the other children (and me) in the house could rest and get some sleep.
It went on for years not just as a bub. She would fit all night in her sleep and I used to sit beside her so she wouldn't choke/suffocate or die. Absolutely horrible time for us.
However, now that is not the case, what we have is a night owl. She never goes to bed before 3.30am! No matter what we do or say, she is use to staying awake long hours. She doesn't need or have allot of sleep. She has created her own monster. She realises it is anti-social and not normal to be up all night every night. But that's how it goes. She is difficult to travel with but at 25 we have to realise she has to live her own life. This all started back as a bub when she was "afraid" to go to sleep.
At the time when she was so ill, there really wasn't anyone who could assist us, with all the sleep issues and we were very stressed.
Good luck ladies. I think you are doing an amazing job.
Oh, I just want to say something else. With Lauren turning 25 on Sunday. well. I never thought she'd make it and I never thought I would either.  We have both made it. I feel she has been in my life for the 60 years I have been here. I can't remember life without her, she has had such a huge impact on me. I am sure she was joined to my hip way way way back! Amazing really....(am I alone here?)

Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Friday, June 05, 2009 9:39 AM
  Subject: Re: FV: Hi Gina..re Mac and sleep


  Hi Gina

   

  Do you know why Mac does not sleep?  Dumb question I know but my brain only works in small steps.  Probably from old age, sleepless nights and too many red wines.  

   

  Anyway, from what I have read quickly is, if you sat or sit up with Mac he is happy and then day light comes and he sleeps is that right.?

   

  I have a bit of experience too in this area, Sarah had Sleep apnea in a big way when she was littler I don't think they called it that then but the long and short was when she went into REM her airways would collapse she would not be able to breathe the brain would tell her to wake up it then the brain told her not to go to sleep.  

  I have a fantastic Respiratory Specialist who I used to call God in those days he worked in a catholic hospital so that was big he was also very pleasing on the eye so that made the sleepless nights bearable. Ha Ha

   

  I won't go into our journey unless you think is worthwhile but more than happy if you think it could be of help.  One thing we did journey down was tonsils out at 6 months bloody terrible but I trusted the persons so I used the gut instinct and it come thru along with a whole host of other stuff.

   

  Hang in there I too think you are doing an amazing job and Mac sounds like a star.

  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: Tuesday, June 02, 2009 9:30 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi Gina..re Mac and sleep

   

  Jaquie

   

  Ahhh, thank you, thank you. I had forgotten about Cal/Mag sups but not sure I knew to combine with the Vit D so that is great info.  

   

  We tried on a number of occasions to get the info on them and the go ahead from Doctors but for a long time never had any willing supporters.  Eventually we did get a mag/cal combo in a powdered form which I still have in the cupboard.  We stopped when we went onto an elimination diet of sorts and I never reinstated them.    We changed his eating around so at night he has bananas, egg and porridge as there is some natural melatonin in both bananas and oats and eggs are supposedly meant to help increase tryptophan levels and subsequently increase serotonin production.  Thank you for reminding me - I will check that out with the Vit D combo information and see what regime I can implement.  

   

  We used to do a lettuce juice tube feed at night (lettuce has natural opiates) and it worked occasionally but not enough to make it an ongoing regime - more pain than gain (until I get a really great grinding juicer. still saving up for that one).

   

  The other supplement I was going to find out about was 5-HTP which is apparently a tryptophan supplement to help with that serotonin production I have seen some of the information around ADHD talk about that - don't even know if it is available in Australia as it has only come to my attention as a possible thing to investige in the last fortnight.

   

  Apparently (courtesy of some kinesiology testing by a GP in Sydney who I didn't' return to as she charges by the minute!!!) he doesn't have any food allergies or intolerances but supposedly does have sensitivities to chlorine and formaldehyde.  Chlorine isn't a problem except for summer when we go swimming as we aren't on town water.  Formaldehyde on the other hand could be a contributor as in my wisdom of better insulation in his bedroom I laid a plywood floor over the existing flooring and have a number of cupboards in his room that are Ikea varieties, both the ply and laminated cupboards would be giving off formaldehyde gasses.  

   

  We are considering moving him to a different room to see if that makes any difference - just need to decide whether I need to lift up the foam tiled rubber flooring for the same reason.  I have one friend who knows a lot more than me about plants also researching to see if there is benefit in certain varieties of indoor plants that are suitable for bedrooms that would absorb any of those chemical gasses - ha ha. as I indicated we are really getting to the pointy end of options.  Sometimes I just laugh at the options we are at they sometimes seem so totally 'out there'.

   

  Surgery might be an option down the track in a few years if we are still having issues.  We have looked at surgery options in the past but our problem to date is until he gets mouth breathing as a consistent we can't risk taking adenoids as currently they act as a shelf stopping any food getting stuck up his nose - was more of a problem when he was a projectile vom-monster than now, but there is still that issue if he gets anything blocking it he could get into real trouble.  We are reluctant to remove tonsils as they are not oversize, doesn't get any infections in them and currently they assist in providing some additional structure to the otherwise compromised physical strength of his neck.  I am fairly confident in the physical therapy we do that we will eventually get these changes to all this nasal/neck/jaw area (if I just push it along a bit more)

   

  Mac doesn't have epilepsy so not sure if there are other options to consider.  The brain injury was diffuse damage to every part so the lack of epilepsy is quite surprising, but boy, do I love being out of the grips of the neurologists!

   

  One other therapy we will consider finding out more about is the light therapy.  As I understand it you have a light with certain lumens or something that is on for set times during the day with the goal being to again stop the release of melatonin during the day - I am not sure if this would even be doable, particularly with school, so it is way down the list of options at this stage.

   

  Seemingly the benefits of sleep deprivation mean you get to research sleep deprivation quite significantly.  Mac used be such a toad that Shawn would shift to a different room, I'd put the light and tv on and prop Mac up in the corner of the bed so he could happy watch inappropriate TV shows 'glaarring' with pleasure at getting his own way yet again, and I would go and get the computer, do my work/payroll etc at 3am sitting next to Mac in bed and then poke around on the internet for any information I could find until the nocturnal child decided it was daytime and therefore an appropriate time to go to sleep - ugh.

   

  Mac is unwell at the moment with a really bad cold (might even be Boy Flu they way he has been groaning and moaning with it).  Funnily, whenever we ask him if he is getting better he feigns a 'bad cough' with a sly grin or evil glint in his eye.  Hmmm, he can have one more day off school then it's back to the grindstone for him.  

   

  Cheers

  Gina


------------------------------------------------------------------------------

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Tuesday, 2 June 2009 6:38 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi Gina..re Mac and sleep

   

  Wow...you guys have been through a lot and worked out a heap of strategies. This kind of challenge for me is what parents miss out getting support with...most people just have no idea about the complexity of what we deal with. I hope you know how awesome you are.

   

  My experience is with Angelman...where again it seems to be a magical combination of strategies which work. There are two I can offer which you haven't listed:

   

  1.       Calcium/magnesium/vitamin d supplements. This was the magic formula for Eli to start sleeping through the night. Cal/mag do a number of things from being a mild anti-epileptic /calming factor for our nervous system, to helping tight muscles relax their tone. Given that this is a challenge for Mac it could be worth a try. See your GP for recommended doses for a little kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of Vit D. These three nutrients work together and you can't absorb/make one work without the other. I'm no longer especially into 'natural' therapies...there is quite a bit of mainstream research confirming the significance of these three nutrients...and the common nature of deficiencies in them. Eli's endocrinologist said he'd like all teenagers to be on this combination, they are so important and so much bone is laid down in teen years. The data shows that where even young people have intellectual disabilities, the rates of osteoporosis are much higher, so good general practice for our kids. Having a teenager with severe osteo I can tell you it isn't a fun outsome.

  Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to sleeping 8-12 hours a night after just a few days on this combination. It doesn't help all kids, but is worth a try.

  2.       The breathing issue is one which is common in angelman too...and surgery gets the best results. This may sound extreme, but I have seen so many kids do so much better...in terms of sleep, health and cognitive function after having adenoids and/or tonsils removed. I think it is early days for Mac to be considering this, but something you might want to think about at some stage. Again...I am very anti surgery...but so many families have had such a huge improvement in quality of life where there is a significant problem. If I could have my time over, I'd have this looked at for Eli. If you wanted to email with other parents who had this surgery done on their young children I could put you in touch.

  3.       Does Mac have epilepsy? There are some other/different strategies if this is the case, perhaps.

   

  I'd love to know if any of the above could help. I think you are awesome even being up for this discussion when you are long term sleep deprived.

   

  Jaquie 

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Monday, 1 June 2009 7:20 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi Gina..re Mac and sleep

   

  Jaquie

   

  Yes please, I am always keen to hear anything on sleep.

   

  I have one other non-medication combo I think I can try that I know of, but maybe haven't exhausted all avenues after all.  Still have some music options to try, then some bed/mattress options - although beds/mattresses are the expensive things to have 'not work' so they are my last resort.

   

  There are a few reasons we think Mac doesn't sleep including any of the following:

  -          cortical vision blindness meaning he may not be getting enough daylight brain messaging to inhibit the release of melatonin during the day then there isn't a good enough supply to get him through the night

  -          same deal with the production of serotonin ie not enough to keep him asleep through the night.

  -          he is a nose breather so any nasal congestion causes him to get very stressed because he can't physically breath through his mouth without significant difficultly - we used to wonder why he coughed all night in the winter months till we worked out that was the only way he could actually breathe he had to rely on the coughing propulsion of air to allow the flow in and out since he couldn't mouth breathe (gave back our parents of the year award for that one ha ha).  As we continue to get gains in his physical structure around his nose, jaw etc I expect this to improve to allow him to return to both nose/mouth breathing like we do - just doesn't help him in the interim period.

  -          he is so incredibly tight in his muscles he turns into a pretzel and is totally uncomfortable after a sleep stint of three-four hours no matter what position you put him in.

  -          he is naughty - he cries for attention and is totally devastated until you touch or speak to him, then he grins the biggest naughtiest grin - ugh  It has improved however, he used to poke his tongue out and make himself gag and then projectile vomit for attention until we managed to remove the projectile vomiting out of his 'list of talents'.

  -          he used to get very stressed by the dark and quiet.  He used to only cope if the lights were on and the tv on - we have managed to wean him out of that by using the melatonin supplements and some white noise - now he copes pretty well regardless.

  -          He hits his peak interactive period around 8pm onwards and being selfish parents we hate missing that part of his life, we love hearing the new sounds, enjoying the increased level of alertness and awareness and interaction so we probably have let him stay up too late for too many years (although there is research to show stroke patients do their best learning in the evening hours as their bodies take longer to get certain hormones etc out of their system through the day so there may be something in that aspect considering Mac's bran injury probably has some similar components) - but mostly I think it is us wanting to enjoy him in that moment.

  -          On the nights we have used valergan he has slept all night and some nights only being rolled in the early hours of the morning but not being any more uncomfortable when he wakes up, so not sure what that tells us.  We wondered whether a memory foam mattress or a water bed could be beneficial for him.

   

  As you can see we haven't done very well narrowing the list of potential contributors down so feel free to share away.  While the sleep deprivation is debilitating for us and him, the difference in him when he has had the full night sleep albeit 'valergan' enhanced to combat his recent hayfever and sinus infections he is noticeably improved in his alertness, awareness and interactivity - he needs us to keep on trying to find answers to the sleep issue for him.

   

  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: Monday, 1 June 2009 7:03 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: FV: Hi Gina..re Mac and sleep

   

  Hi Gina, and folks

   

  I am at a conference and trying to catch up on my emails during the boring bits..so far got rid of more than 1000 of them and feeling smug!

   

  Gina, I only just finished reading your post below, and wondered if you wanted to talk about sleep. Do you know why Mac doesn't sleep? We went through the whole sleep disorder thing with Eli...angelman is notoriously difficult in terms of sleep and I might know some stuff you haven't tried/heard about...let me know if you are interested in discussing. I reckon sleep deprivation is one of the most difficult things us parents have to deal with.

   

  Jaquie J

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Monday, 4 May 2009 9:37 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

   

  Thanks Catherine & Meg

   

  Catherine, That is great information. thank you.  I do want all of that for every person (of course with the added benefit of it being fully accessible with built in discreet ceiling tracking, automatic wider doors & taps, Japanese style bidet toilets, fully accessible bathrooms with turning circles and lifts - so that an otherwise unlikely candidate for independence has the best shot at independence).  Mental note to self. must change Australian Building Standards when time permits.

   

  And I can see how Young Care is different to that model  but still don't know what to wish for when it comes to those too young to be in aged care facilities and who have nowhere else to go, or for those imprisoned in their homes because, through no fault of their own, true access to their community has been hard to achieve and I guess my na?ve belief in all this is that by Young Care providing a middle ground for these people they can then redevelop relationships, create friendships and then possibly choose to move on from that model.    It is a very happy shiny place in my world - I can often assume things will simply exist when they don't.

   

  BUT you might be pleased to know we have just taken a very big step for us, and only agreed to because I have taken what you have all said very seriously.

   

  We have to attend a birthday party in Wagga this weekend and while we wanted to attend the party without Mac we still wanted him over in Wagga for the rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going to look after him on Saturday night.  This is huge from our perspective - we don't ask friends to babysit- mostly because Mac simply just doesn't sleep but also because he just isn't a disruptive child - he is only hard work over night so he is easy to take out and about with us.  I feel a bit of a fake as he has been a little unwell and we have had to revert to some medication for him for the first time in 5 years and the slightly pleasant side effect is that it does make him sleep a little better - at least enough that I don't feel like these friends will be expected to pull an 'all-nighter' having to sit up with him the entire night.

   

  So thank you all for giving me the courage to do this - even if it is with performance enhancing drugs and the likely significant financial cost to us in red wine when we stay with them for the next night.  I will remember to chant. "I have no guilt, this is normal & natural" whenever I feel myself slipping into that 'guilt trap'.

   

  Meg, thanks for your flippant throw away line about the 'carers report'.  I haven't even begun to read it - still rumbling with school stuff.  But thanks for the impetus for great conversation/comments.  

   

  Cheers All

   

  Gina

   


------------------------------------------------------------------------------

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Monday, 4 May 2009 6:19 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

   

  Hi there, 

  Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. 

   

  This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called 'innovative options' like 'villages', and 'cluster houses'. This is the difference between what you have identified Gina ie the luxury over 50's developments and what people with disability will get....

   

  Response to contemporary standards claim (2)

  Characteristics of village style accommodation for people without disabilities 

  ?        Used by a wide variety of people of all ages, gender, ethnicity and capacity

  ?        Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out)

  ?        They live there by choice

  ?        They can come and go as they choose

  ?        They have control over their lifestyle (what to wear, what to eat, when to go to bed etc)

  ?        They can make unquestioned risky decisions

  ?        They have control over their financial arrangements/budget

  ?        They can choose who they want to live with and be friends with

  ?        They can choose their recreational activities

  ?        They choose where, when and how they work

  ?        They can move out when they choose.

   

  (This slide is courtesy of Anne Elysee)

   

   

  Catherine

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Monday, 4 May 2009 5:49 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

   

  Thanks Libby

  I am happy to read anything anyone has to say.  As I said in my post this is an area I get very confused about and am trying to understand more about it.  Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues).  And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say.  

   

  I also know I don't have a really good grasp of the variety of living arrangement people choose.  For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity.  I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families.  My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future.

   

  Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say.

   

  Cheers

  Gina


------------------------------------------------------------------------------

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Monday, 4 May 2009 4:30 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

   

  It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again.

   

  Anywho

   

  It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like

   

   - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved

   - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". 

   - wanting to connect to other families interested in governing and running their own supports.

   - working on valued roles in general

   - teaching others. Speaking at conferences and lectures and assisting others to learn.

   

  and so on

   

  I think what I'm saying is that

   - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on.

   - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches.

   

  All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. 

   

  Libby 

   


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From familyvoices at inpress.pledgonline.com  Thu Jun  4 18:38:28 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 09:38:28 +0800
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91>
	<66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>
Message-ID: <000f01c9e57e$53dd93c0$fb98bb40$@net.au>

Oh God Maureen you are not alone, my boy is only 17 and it seems like a life
time for me ? I think it?s the intense beginnings of their lives,  the
continuum of learning about their unique selves whilst problem solving along
with constant worry for their futures that make it feel like that ? they and
us have so many extraordinary, intense experiences within those years that
most people don?t have in a lifetime (with the exception of old age when our
mind set is ?this is a normal progression of old age? and the duration is
often not as long) You described Daniel to a T re the sleep, seizures etc.
Still having the sleep troubles and seizures have started again ? is a real
kick in the guts when they go backwards after so many gains, just hoping now
that it?s a puberty thing and will move through to better pastures (soon I
hope).  Also recently had the diagnosis that Dan will lose all capacity to
weight bear within the next 12 months ? this is all regardless of the
swimming, standing frame, wearing his AFO?s etc we have diligently been
doing for years.  Although that?s what they tell us (they told us he
wouldn?t be here beyond 2years of age too) I am forging on regardless with a
maybe naive belief that if we keep him moving he may be in with a chance to
keep this skill ? time will tell.

 

I often wonder about siblings who ultimately will have the longest time in
our children?s lives ? at the age of 7 Jason started asking me ?will I have
to look after Daniel when you die?.  I have constantly reassured him that he
will not have to care for him, that we would like him to be in his life as a
brother would be, invite him over for a bbq, down to the pub and so on.  The
Circle of Friends has helped him a lot to see others wanting to be in Dan?s
life and because they are so close in age their friends have sort of joined
into a larger group meaning they both made new friends.  Another comment
Jase said, I think he was about 10 was ?Dan teaches us patients doesn?t he
mum? ? how true.

 

I saw the end of something on Catalyst the other night about light and sleep
? the gist of it I think was that certain lights help a person sleep at
night or when they need too ie a shift worker.  I am going to try and catch
the repeat to see the whole segment.  I think Gina touched on light exposure
too.  Did anyone see it?

 

Jo

 

 

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 8:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

HI Jane/Gina

Yes Mac does sound like a star and so do you both!

I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.

Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.

It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.

However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.

At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.

Good luck ladies. I think you are doing an amazing job.

Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)

 

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 05, 2009 9:39 AM

Subject: Re: FV: Hi Gina..re Mac and sleep

 

Hi Gina

 

Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  

 

Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?

 

I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  

I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha

 

I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.

 

Hang in there I too think you are doing an amazing job and Mac sounds like a
star.

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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  

 

We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  

 

We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).

 

The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.

 

Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  

 

We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.

 

Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)

 

Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!

 

One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.

 

Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.

 

Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.

 

My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:

 

1.       Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.

Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.

2.       The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.

3.       Does Mac have epilepsy? There are some other/different strategies
if this is the case, perhaps.

 

I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.

 

Jaquie 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Yes please, I am always keen to hear anything on sleep.

 

I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.

 

There are a few reasons we think Mac doesn?t sleep including any of the
following:

-   cortical vision blindness meaning he may not be getting enough daylight
brain messaging to inhibit the release of melatonin during the day then
there isn?t a good enough supply to get him through the night

-   same deal with the production of serotonin ie not enough to keep him
asleep through the night.

-   he is a nose breather so any nasal congestion causes him to get very
stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.

-   he is so incredibly tight in his muscles he turns into a pretzel and is
totally uncomfortable after a sleep stint of three-four hours no matter what
position you put him in.

-   he is naughty ? he cries for attention and is totally devastated until
you touch or speak to him, then he grins the biggest naughtiest grin ? ugh
It has improved however, he used to poke his tongue out and make himself gag
and then projectile vomit for attention until we managed to remove the
projectile vomiting out of his ?list of talents?.

-   he used to get very stressed by the dark and quiet.  He used to only
cope if the lights were on and the tv on ? we have managed to wean him out
of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.

-   He hits his peak interactive period around 8pm onwards and being selfish
parents we hate missing that part of his life, we love hearing the new
sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.

-   On the nights we have used valergan he has slept all night and some
nights only being rolled in the early hours of the morning but not being any
more uncomfortable when he wakes up, so not sure what that tells us.  We
wondered whether a memory foam mattress or a water bed could be beneficial
for him.

 

As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.

 

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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

?   Used by a wide variety of people of all ages, gender, ethnicity and
capacity

?   Residents have ownership or tenancy rights (They cannot be arbitrarily
relocated from one unit to another or be thrown out)

?   They live there by choice

?   They can come and go as they choose

?   They have control over their lifestyle (what to wear, what to eat, when
to go to bed etc)

?   They can make unquestioned risky decisions

?   They have control over their financial arrangements/budget

?   They can choose who they want to live with and be friends with

?   They can choose their recreational activities

?   They choose where, when and how they work

?   They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 


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From familyvoices at inpress.pledgonline.com  Thu Jun  4 19:02:49 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 12:02:49 +1000
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <000f01c9e57e$53dd93c0$fb98bb40$@net.au>
Message-ID: <7tb87v$b0u2lb@ipmail01.adl6.internode.on.net>

Jo
Check out the ABCs website with iView http://www.abc.net.au/iview/#/catchup
 
They often have repeats of some programs available online ? I saw bits and
pieces of the show too.
 
Gina
 
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 11:38 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Oh God Maureen you are not alone, my boy is only 17 and it seems like a life
time for me ? I think it?s the intense beginnings of their lives,  the
continuum of learning about their unique selves whilst problem solving along
with constant worry for their futures that make it feel like that ? they and
us have so many extraordinary, intense experiences within those years that
most people don?t have in a lifetime (with the exception of old age when our
mind set is ?this is a normal progression of old age? and the duration is
often not as long) You described Daniel to a T re the sleep, seizures etc.
Still having the sleep troubles and seizures have started again ? is a real
kick in the guts when they go backwards after so many gains, just hoping now
that it?s a puberty thing and will move through to better pastures (soon I
hope).  Also recently had the diagnosis that Dan will lose all capacity to
weight bear within the next 12 months ? this is all regardless of the
swimming, standing frame, wearing his AFO?s etc we have diligently been
doing for years.  Although that?s what they tell us (they told us he
wouldn?t be here beyond 2years of age too) I am forging on regardless with a
maybe naive belief that if we keep him moving he may be in with a chance to
keep this skill ? time will tell.
 
I often wonder about siblings who ultimately will have the longest time in
our children?s lives ? at the age of 7 Jason started asking me ?will I have
to look after Daniel when you die?.  I have constantly reassured him that he
will not have to care for him, that we would like him to be in his life as a
brother would be, invite him over for a bbq, down to the pub and so on.  The
Circle of Friends has helped him a lot to see others wanting to be in Dan?s
life and because they are so close in age their friends have sort of joined
into a larger group meaning they both made new friends.  Another comment
Jase said, I think he was about 10 was ?Dan teaches us patients doesn?t he
mum? ? how true.
 
I saw the end of something on Catalyst the other night about light and sleep
? the gist of it I think was that certain lights help a person sleep at
night or when they need too ie a shift worker.  I am going to try and catch
the repeat to see the whole segment.  I think Gina touched on light exposure
too.  Did anyone see it?
 
Jo
 
 
 
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 8:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
HI Jane/Gina
Yes Mac does sound like a star and so do you both!
I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.
Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.
It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.
However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.
At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.
Good luck ladies. I think you are doing an amazing job.
Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)
 
Maureen
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Friday, June 05, 2009 9:39 AM
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Hi Gina
 
Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  
 
Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?
 
I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  
I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha
 
I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.
 
Hang in there I too think you are doing an amazing job and Mac sounds like a
star.
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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  
 
We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  
 
We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).
 
The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.
 
Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  
 
We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.
 
Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)
 
Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!
 
One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.
 
Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.
 
Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.
 
My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:
 
1. Calcium/magnesium/vitamin d supplements. This was the magic formula for
Eli to start sleeping through the night. Cal/mag do a number of things from
being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.
Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.
2. The breathing issue is one which is common in angelman too...and surgery
gets the best results. This may sound extreme, but I have seen so many kids
do so much better...in terms of sleep, health and cognitive function after
having adenoids and/or tonsils removed. I think it is early days for Mac to
be considering this, but something you might want to think about at some
stage. Again...I am very anti surgery...but so many families have had such a
huge improvement in quality of life where there is a significant problem. If
I could have my time over, I?d have this looked at for Eli. If you wanted to
email with other parents who had this surgery done on their young children I
could put you in touch.
3. Does Mac have epilepsy? There are some other/different strategies if this
is the case, perhaps.
 
I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.
 
Jaquie 
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Yes please, I am always keen to hear anything on sleep.
 
I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.
 
There are a few reasons we think Mac doesn?t sleep including any of the
following:
-    cortical vision blindness meaning he may not be getting enough daylight
brain messaging to inhibit the release of melatonin during the day then
there isn?t a good enough supply to get him through the night
-    same deal with the production of serotonin ie not enough to keep him
asleep through the night.
-    he is a nose breather so any nasal congestion causes him to get very
stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.
-    he is so incredibly tight in his muscles he turns into a pretzel and is
totally uncomfortable after a sleep stint of three-four hours no matter what
position you put him in.
-    he is naughty ? he cries for attention and is totally devastated until
you touch or speak to him, then he grins the biggest naughtiest grin ? ugh
It has improved however, he used to poke his tongue out and make himself gag
and then projectile vomit for attention until we managed to remove the
projectile vomiting out of his ?list of talents?.
-    he used to get very stressed by the dark and quiet.  He used to only
cope if the lights were on and the tv on ? we have managed to wean him out
of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.
-    He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.
-    On the nights we have used valergan he has slept all night and some
nights only being rolled in the early hours of the morning but not being any
more uncomfortable when he wakes up, so not sure what that tells us.  We
wondered whether a memory foam mattress or a water bed could be beneficial
for him.
 
As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.
 
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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep
 
Hi Gina, and folks
 
I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!
 
Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Catherine & Meg
 
Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits

 
And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.
 
BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.
 
We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.
 
So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.
 
Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  
 
Cheers All
 
Gina
 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Hi there, 
Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 
 
This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....
 
Response to contemporary standards claim (2)
Characteristics of village style accommodation for people without
disabilities 
*   Used by a wide variety of people of all ages, gender, ethnicity and
capacity
*   Residents have ownership or tenancy rights (They cannot be arbitrarily
relocated from one unit to another or be thrown out)
*   They live there by choice
*   They can come and go as they choose
*   They have control over their lifestyle (what to wear, what to eat, when
to go to bed etc)
*   They can make unquestioned risky decisions
*   They have control over their financial arrangements/budget
*   They can choose who they want to live with and be friends with
*   They can choose their recreational activities
*   They choose where, when and how they work
*   They can move out when they choose.
 
(This slide is courtesy of Anne Elysee)
 
 
Catherine
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Libby
I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  
 
I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.
 
Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.
 
Anywho
 
It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like
 
 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved
 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 
 - wanting to connect to other families interested in governing and running
their own supports.
 - working on valued roles in general
 - teaching others. Speaking at conferences and lectures and assisting
others to learn.
 
and so on
 
I think what I'm saying is that
 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.
 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.
 
All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 
 
Libby 
 

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From familyvoices at inpress.pledgonline.com  Thu Jun  4 22:27:35 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 15:27:35 +1000
Subject: FV: Hi Gina..re Mac and sleep
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91><66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>
	<000f01c9e57e$53dd93c0$fb98bb40$@net.au>
Message-ID: <ADF9F84E4D074A0197024A38B0CF6769@D8XYGK1S>

Thanks Jo for your words. Nice to hear from you.
I tell my older children (Carly 34 and Cameron 33) they don't have to look after Lauren but they must always "Look out" for her. Like they must always look out for each other. Now and always.
I think it's working!
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Friday, June 05, 2009 11:38 AM
  Subject: Re: FV: Hi Gina..re Mac and sleep


  Oh God Maureen you are not alone, my boy is only 17 and it seems like a life time for me - I think it's the intense beginnings of their lives,  the continuum of learning about their unique selves whilst problem solving along with constant worry for their futures that make it feel like that - they and us have so many extraordinary, intense experiences within those years that most people don't have in a lifetime (with the exception of old age when our mind set is "this is a normal progression of old age" and the duration is often not as long) You described Daniel to a T re the sleep, seizures etc.  Still having the sleep troubles and seizures have started again - is a real kick in the guts when they go backwards after so many gains, just hoping now that it's a puberty thing and will move through to better pastures (soon I hope).  Also recently had the diagnosis that Dan will lose all capacity to weight bear within the next 12 months - this is all regardless of the swimming, standing frame, wearing his AFO's etc we have diligently been doing for years.  Although that's what they tell us (they told us he wouldn't be here beyond 2years of age too) I am forging on regardless with a maybe naive belief that if we keep him moving he may be in with a chance to keep this skill - time will tell.

   

  I often wonder about siblings who ultimately will have the longest time in our children's lives - at the age of 7 Jason started asking me "will I have to look after Daniel when you die".  I have constantly reassured him that he will not have to care for him, that we would like him to be in his life as a brother would be, invite him over for a bbq, down to the pub and so on.  The Circle of Friends has helped him a lot to see others wanting to be in Dan's life and because they are so close in age their friends have sort of joined into a larger group meaning they both made new friends.  Another comment Jase said, I think he was about 10 was "Dan teaches us patients doesn't he mum" - how true.

   

  I saw the end of something on Catalyst the other night about light and sleep - the gist of it I think was that certain lights help a person sleep at night or when they need too ie a shift worker.  I am going to try and catch the repeat to see the whole segment.  I think Gina touched on light exposure too.  Did anyone see it?

   

  Jo

   

   

   

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Friday, 5 June 2009 8:17 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi Gina..re Mac and sleep

   

  HI Jane/Gina

  Yes Mac does sound like a star and so do you both!

  I just wish I had all this support and information when Lauren was little. She will be 25 on Sunday.

  Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch pushed her in the pram around the suburbs so the other children (and me) in the house could rest and get some sleep.

  It went on for years not just as a bub. She would fit all night in her sleep and I used to sit beside her so she wouldn't choke/suffocate or die. Absolutely horrible time for us.

  However, now that is not the case, what we have is a night owl. She never goes to bed before 3.30am! No matter what we do or say, she is use to staying awake long hours. She doesn't need or have allot of sleep. She has created her own monster. She realises it is anti-social and not normal to be up all night every night. But that's how it goes. She is difficult to travel with but at 25 we have to realise she has to live her own life. This all started back as a bub when she was "afraid" to go to sleep.

  At the time when she was so ill, there really wasn't anyone who could assist us, with all the sleep issues and we were very stressed.

  Good luck ladies. I think you are doing an amazing job.

  Oh, I just want to say something else. With Lauren turning 25 on Sunday. well. I never thought she'd make it and I never thought I would either.  We have both made it. I feel she has been in my life for the 60 years I have been here. I can't remember life without her, she has had such a huge impact on me. I am sure she was joined to my hip way way way back! Amazing really....(am I alone here?)

   

  Maureen

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Friday, June 05, 2009 9:39 AM

    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Hi Gina

     

    Do you know why Mac does not sleep?  Dumb question I know but my brain only works in small steps.  Probably from old age, sleepless nights and too many red wines.  

     

    Anyway, from what I have read quickly is, if you sat or sit up with Mac he is happy and then day light comes and he sleeps is that right.?

     

    I have a bit of experience too in this area, Sarah had Sleep apnea in a big way when she was littler I don't think they called it that then but the long and short was when she went into REM her airways would collapse she would not be able to breathe the brain would tell her to wake up it then the brain told her not to go to sleep.  

    I have a fantastic Respiratory Specialist who I used to call God in those days he worked in a catholic hospital so that was big he was also very pleasing on the eye so that made the sleepless nights bearable. Ha Ha

     

    I won't go into our journey unless you think is worthwhile but more than happy if you think it could be of help.  One thing we did journey down was tonsils out at 6 months bloody terrible but I trusted the persons so I used the gut instinct and it come thru along with a whole host of other stuff.

     

    Hang in there I too think you are doing an amazing job and Mac sounds like a star.

    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: Tuesday, June 02, 2009 9:30 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Jaquie

     

    Ahhh, thank you, thank you. I had forgotten about Cal/Mag sups but not sure I knew to combine with the Vit D so that is great info.  

     

    We tried on a number of occasions to get the info on them and the go ahead from Doctors but for a long time never had any willing supporters.  Eventually we did get a mag/cal combo in a powdered form which I still have in the cupboard.  We stopped when we went onto an elimination diet of sorts and I never reinstated them.    We changed his eating around so at night he has bananas, egg and porridge as there is some natural melatonin in both bananas and oats and eggs are supposedly meant to help increase tryptophan levels and subsequently increase serotonin production.  Thank you for reminding me - I will check that out with the Vit D combo information and see what regime I can implement.  

     

    We used to do a lettuce juice tube feed at night (lettuce has natural opiates) and it worked occasionally but not enough to make it an ongoing regime - more pain than gain (until I get a really great grinding juicer. still saving up for that one).

     

    The other supplement I was going to find out about was 5-HTP which is apparently a tryptophan supplement to help with that serotonin production I have seen some of the information around ADHD talk about that - don't even know if it is available in Australia as it has only come to my attention as a possible thing to investige in the last fortnight.

     

    Apparently (courtesy of some kinesiology testing by a GP in Sydney who I didn't' return to as she charges by the minute!!!) he doesn't have any food allergies or intolerances but supposedly does have sensitivities to chlorine and formaldehyde.  Chlorine isn't a problem except for summer when we go swimming as we aren't on town water.  Formaldehyde on the other hand could be a contributor as in my wisdom of better insulation in his bedroom I laid a plywood floor over the existing flooring and have a number of cupboards in his room that are Ikea varieties, both the ply and laminated cupboards would be giving off formaldehyde gasses.  

     

    We are considering moving him to a different room to see if that makes any difference - just need to decide whether I need to lift up the foam tiled rubber flooring for the same reason.  I have one friend who knows a lot more than me about plants also researching to see if there is benefit in certain varieties of indoor plants that are suitable for bedrooms that would absorb any of those chemical gasses - ha ha. as I indicated we are really getting to the pointy end of options.  Sometimes I just laugh at the options we are at they sometimes seem so totally 'out there'.

     

    Surgery might be an option down the track in a few years if we are still having issues.  We have looked at surgery options in the past but our problem to date is until he gets mouth breathing as a consistent we can't risk taking adenoids as currently they act as a shelf stopping any food getting stuck up his nose - was more of a problem when he was a projectile vom-monster than now, but there is still that issue if he gets anything blocking it he could get into real trouble.  We are reluctant to remove tonsils as they are not oversize, doesn't get any infections in them and currently they assist in providing some additional structure to the otherwise compromised physical strength of his neck.  I am fairly confident in the physical therapy we do that we will eventually get these changes to all this nasal/neck/jaw area (if I just push it along a bit more)

     

    Mac doesn't have epilepsy so not sure if there are other options to consider.  The brain injury was diffuse damage to every part so the lack of epilepsy is quite surprising, but boy, do I love being out of the grips of the neurologists!

     

    One other therapy we will consider finding out more about is the light therapy.  As I understand it you have a light with certain lumens or something that is on for set times during the day with the goal being to again stop the release of melatonin during the day - I am not sure if this would even be doable, particularly with school, so it is way down the list of options at this stage.

     

    Seemingly the benefits of sleep deprivation mean you get to research sleep deprivation quite significantly.  Mac used be such a toad that Shawn would shift to a different room, I'd put the light and tv on and prop Mac up in the corner of the bed so he could happy watch inappropriate TV shows 'glaarring' with pleasure at getting his own way yet again, and I would go and get the computer, do my work/payroll etc at 3am sitting next to Mac in bed and then poke around on the internet for any information I could find until the nocturnal child decided it was daytime and therefore an appropriate time to go to sleep - ugh.

     

    Mac is unwell at the moment with a really bad cold (might even be Boy Flu they way he has been groaning and moaning with it).  Funnily, whenever we ask him if he is getting better he feigns a 'bad cough' with a sly grin or evil glint in his eye.  Hmmm, he can have one more day off school then it's back to the grindstone for him.  

     

    Cheers

    Gina


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Tuesday, 2 June 2009 6:38 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Wow...you guys have been through a lot and worked out a heap of strategies. This kind of challenge for me is what parents miss out getting support with...most people just have no idea about the complexity of what we deal with. I hope you know how awesome you are.

     

    My experience is with Angelman...where again it seems to be a magical combination of strategies which work. There are two I can offer which you haven't listed:

     

    1.       Calcium/magnesium/vitamin d supplements. This was the magic formula for Eli to start sleeping through the night. Cal/mag do a number of things from being a mild anti-epileptic /calming factor for our nervous system, to helping tight muscles relax their tone. Given that this is a challenge for Mac it could be worth a try. See your GP for recommended doses for a little kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of Vit D. These three nutrients work together and you can't absorb/make one work without the other. I'm no longer especially into 'natural' therapies...there is quite a bit of mainstream research confirming the significance of these three nutrients...and the common nature of deficiencies in them. Eli's endocrinologist said he'd like all teenagers to be on this combination, they are so important and so much bone is laid down in teen years. The data shows that where even young people have intellectual disabilities, the rates of osteoporosis are much higher, so good general practice for our kids. Having a teenager with severe osteo I can tell you it isn't a fun outsome.

    Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to sleeping 8-12 hours a night after just a few days on this combination. It doesn't help all kids, but is worth a try.

    2.       The breathing issue is one which is common in angelman too...and surgery gets the best results. This may sound extreme, but I have seen so many kids do so much better...in terms of sleep, health and cognitive function after having adenoids and/or tonsils removed. I think it is early days for Mac to be considering this, but something you might want to think about at some stage. Again...I am very anti surgery...but so many families have had such a huge improvement in quality of life where there is a significant problem. If I could have my time over, I'd have this looked at for Eli. If you wanted to email with other parents who had this surgery done on their young children I could put you in touch.

    3.       Does Mac have epilepsy? There are some other/different strategies if this is the case, perhaps.

     

    I'd love to know if any of the above could help. I think you are awesome even being up for this discussion when you are long term sleep deprived.

     

    Jaquie 

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 1 June 2009 7:20 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Jaquie

     

    Yes please, I am always keen to hear anything on sleep.

     

    I have one other non-medication combo I think I can try that I know of, but maybe haven't exhausted all avenues after all.  Still have some music options to try, then some bed/mattress options - although beds/mattresses are the expensive things to have 'not work' so they are my last resort.

     

    There are a few reasons we think Mac doesn't sleep including any of the following:

    -   cortical vision blindness meaning he may not be getting enough daylight brain messaging to inhibit the release of melatonin during the day then there isn't a good enough supply to get him through the night

    -   same deal with the production of serotonin ie not enough to keep him asleep through the night.

    -   he is a nose breather so any nasal congestion causes him to get very stressed because he can't physically breath through his mouth without significant difficultly - we used to wonder why he coughed all night in the winter months till we worked out that was the only way he could actually breathe he had to rely on the coughing propulsion of air to allow the flow in and out since he couldn't mouth breathe (gave back our parents of the year award for that one ha ha).  As we continue to get gains in his physical structure around his nose, jaw etc I expect this to improve to allow him to return to both nose/mouth breathing like we do - just doesn't help him in the interim period.

    -   he is so incredibly tight in his muscles he turns into a pretzel and is totally uncomfortable after a sleep stint of three-four hours no matter what position you put him in.

    -   he is naughty - he cries for attention and is totally devastated until you touch or speak to him, then he grins the biggest naughtiest grin - ugh  It has improved however, he used to poke his tongue out and make himself gag and then projectile vomit for attention until we managed to remove the projectile vomiting out of his 'list of talents'.

    -   he used to get very stressed by the dark and quiet.  He used to only cope if the lights were on and the tv on - we have managed to wean him out of that by using the melatonin supplements and some white noise - now he copes pretty well regardless.

    -   He hits his peak interactive period around 8pm onwards and being selfish parents we hate missing that part of his life, we love hearing the new sounds, enjoying the increased level of alertness and awareness and interaction so we probably have let him stay up too late for too many years (although there is research to show stroke patients do their best learning in the evening hours as their bodies take longer to get certain hormones etc out of their system through the day so there may be something in that aspect considering Mac's bran injury probably has some similar components) - but mostly I think it is us wanting to enjoy him in that moment.

    -   On the nights we have used valergan he has slept all night and some nights only being rolled in the early hours of the morning but not being any more uncomfortable when he wakes up, so not sure what that tells us.  We wondered whether a memory foam mattress or a water bed could be beneficial for him.

     

    As you can see we haven't done very well narrowing the list of potential contributors down so feel free to share away.  While the sleep deprivation is debilitating for us and him, the difference in him when he has had the full night sleep albeit 'valergan' enhanced to combat his recent hayfever and sinus infections he is noticeably improved in his alertness, awareness and interactivity - he needs us to keep on trying to find answers to the sleep issue for him.

     

    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: Monday, 1 June 2009 7:03 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: FV: Hi Gina..re Mac and sleep

     

    Hi Gina, and folks

     

    I am at a conference and trying to catch up on my emails during the boring bits..so far got rid of more than 1000 of them and feeling smug!

     

    Gina, I only just finished reading your post below, and wondered if you wanted to talk about sleep. Do you know why Mac doesn't sleep? We went through the whole sleep disorder thing with Eli...angelman is notoriously difficult in terms of sleep and I might know some stuff you haven't tried/heard about...let me know if you are interested in discussing. I reckon sleep deprivation is one of the most difficult things us parents have to deal with.

     

    Jaquie J

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 9:37 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    Thanks Catherine & Meg

     

    Catherine, That is great information. thank you.  I do want all of that for every person (of course with the added benefit of it being fully accessible with built in discreet ceiling tracking, automatic wider doors & taps, Japanese style bidet toilets, fully accessible bathrooms with turning circles and lifts - so that an otherwise unlikely candidate for independence has the best shot at independence).  Mental note to self. must change Australian Building Standards when time permits.

     

    And I can see how Young Care is different to that model  but still don't know what to wish for when it comes to those too young to be in aged care facilities and who have nowhere else to go, or for those imprisoned in their homes because, through no fault of their own, true access to their community has been hard to achieve and I guess my na?ve belief in all this is that by Young Care providing a middle ground for these people they can then redevelop relationships, create friendships and then possibly choose to move on from that model.    It is a very happy shiny place in my world - I can often assume things will simply exist when they don't.

     

    BUT you might be pleased to know we have just taken a very big step for us, and only agreed to because I have taken what you have all said very seriously.

     

    We have to attend a birthday party in Wagga this weekend and while we wanted to attend the party without Mac we still wanted him over in Wagga for the rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going to look after him on Saturday night.  This is huge from our perspective - we don't ask friends to babysit- mostly because Mac simply just doesn't sleep but also because he just isn't a disruptive child - he is only hard work over night so he is easy to take out and about with us.  I feel a bit of a fake as he has been a little unwell and we have had to revert to some medication for him for the first time in 5 years and the slightly pleasant side effect is that it does make him sleep a little better - at least enough that I don't feel like these friends will be expected to pull an 'all-nighter' having to sit up with him the entire night.

     

    So thank you all for giving me the courage to do this - even if it is with performance enhancing drugs and the likely significant financial cost to us in red wine when we stay with them for the next night.  I will remember to chant. "I have no guilt, this is normal & natural" whenever I feel myself slipping into that 'guilt trap'.

     

    Meg, thanks for your flippant throw away line about the 'carers report'.  I haven't even begun to read it - still rumbling with school stuff.  But thanks for the impetus for great conversation/comments.  

     

    Cheers All

     

    Gina

     


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 6:19 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    Hi there, 

    Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. 

     

    This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called 'innovative options' like 'villages', and 'cluster houses'. This is the difference between what you have identified Gina ie the luxury over 50's developments and what people with disability will get....

     

    Response to contemporary standards claim (2)

    Characteristics of village style accommodation for people without disabilities 

    ?   Used by a wide variety of people of all ages, gender, ethnicity and capacity

    ?   Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out)

    ?   They live there by choice

    ?   They can come and go as they choose

    ?   They have control over their lifestyle (what to wear, what to eat, when to go to bed etc)

    ?   They can make unquestioned risky decisions

    ?   They have control over their financial arrangements/budget

    ?   They can choose who they want to live with and be friends with

    ?   They can choose their recreational activities

    ?   They choose where, when and how they work

    ?   They can move out when they choose.

     

    (This slide is courtesy of Anne Elysee)

     

     

    Catherine

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 5:49 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    Thanks Libby

    I am happy to read anything anyone has to say.  As I said in my post this is an area I get very confused about and am trying to understand more about it.  Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues).  And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say.  

     

    I also know I don't have a really good grasp of the variety of living arrangement people choose.  For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity.  I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families.  My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future.

     

    Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say.

     

    Cheers

    Gina


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 4:30 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again.

     

    Anywho

     

    It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like

     

     - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved

     - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". 

     - wanting to connect to other families interested in governing and running their own supports.

     - working on valued roles in general

     - teaching others. Speaking at conferences and lectures and assisting others to learn.

     

    and so on

     

    I think what I'm saying is that

     - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on.

     - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches.

     

    All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. 

     

    Libby 

     


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From familyvoices at inpress.pledgonline.com  Thu Jun  4 23:49:30 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 16:19:30 +0930
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <ADF9F84E4D074A0197024A38B0CF6769@D8XYGK1S>
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91><66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>
	<000f01c9e57e$53dd93c0$fb98bb40$@net.au>
	<ADF9F84E4D074A0197024A38B0CF6769@D8XYGK1S>
Message-ID: <E9A98881-2259-46D6-BB8D-6B58A930BAAE@aapt.net.au>

Absolutely agree Maureen. We use the terms 'care about' as opposed to  
'care for'.  At least it makes a distinction, but I suspect the two  
might get blurred when I am not around and his siblings will have to  
step in and do a bit of the 'caring for' at times.   But they do know  
their main role is to 'care about'.

  Jo. ........ Some Drs just don't get it!!   What's the point of  
telling you that?????   What significance does it have in your current  
day to day life when they can see what a mighty effort you have and  
are putting in.? There is no relevance!!   Keep going - you know what  
is best for Dan!!

Jill
On 05/06/2009, at 2:57 PM, Family Voices wrote:

> Thanks Jo for your words. Nice to hear from you.
> I tell my older children (Carly 34 and Cameron 33) they don't have  
> to look after Lauren but they must always "Look out" for her. Like  
> they must always look out for each other. Now and always.
> I think it's working!
> Maureen
> ----- Original Message -----
> From: Family Voices
> To: familyvoices at inpress.pledgonline.com
> Sent: Friday, June 05, 2009 11:38 AM
> Subject: Re: FV: Hi Gina..re Mac and sleep
>
> Oh God Maureen you are not alone, my boy is only 17 and it seems  
> like a life time for me ? I think it?s the intense beginnings of  
> their lives,  the continuum of learning about their unique selves  
> whilst problem solving along with constant worry for their futures  
> that make it feel like that ? they and us have so many  
> extraordinary, intense experiences within those years that most  
> people don?t have in a lifetime (with the exception of old age when  
> our mind set is ?this is a normal progression of old age? and the  
> duration is often not as long) You described Daniel to a T re the  
> sleep, seizures etc.  Still having the sleep troubles and seizures  
> have started again ? is a real kick in the guts when they go  
> backwards after so many gains, just hoping now that it?s a puberty  
> thing and will move through to better pastures (soon I hope).  Also  
> recently had the diagnosis that Dan will lose all capacity to weight  
> bear within the next 12 months ? this is all regardless of the  
> swimming, standing frame, wearing his AFO?s etc we have diligently  
> been doing for years.  Although that?s what they tell us (they told  
> us he wouldn?t be here beyond 2years of age too) I am forging on  
> regardless with a maybe naive belief that if we keep him moving he  
> may be in with a chance to keep this skill ? time will tell.
>
> I often wonder about siblings who ultimately will have the longest  
> time in our children?s lives ? at the age of 7 Jason started asking  
> me ?will I have to look after Daniel when you die?.  I have  
> constantly reassured him that he will not have to care for him, that  
> we would like him to be in his life as a brother would be, invite  
> him over for a bbq, down to the pub and so on.  The Circle of  
> Friends has helped him a lot to see others wanting to be in Dan?s  
> life and because they are so close in age their friends have sort of  
> joined into a larger group meaning they both made new friends.   
> Another comment Jase said, I think he was about 10 was ?Dan teaches  
> us patients doesn?t he mum? ? how true.
>
> I saw the end of something on Catalyst the other night about light  
> and sleep ? the gist of it I think was that certain lights help a  
> person sleep at night or when they need too ie a shift worker.  I am  
> going to try and catch the repeat to see the whole segment.  I think  
> Gina touched on light exposure too.  Did anyone see it?
>
> Jo
>
>
>
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Friday, 5 June 2009 8:17 AM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Hi Gina..re Mac and sleep
>
> HI Jane/Gina
> Yes Mac does sound like a star and so do you both!
> I just wish I had all this support and information when Lauren was  
> little. She will be 25 on Sunday.
> Her sleep pattern was terrible from birth. Many sleepless nights as  
> Murdoch pushed her in the pram around the suburbs so the other  
> children (and me) in the house could rest and get some sleep.
> It went on for years not just as a bub. She would fit all night in  
> her sleep and I used to sit beside her so she wouldn't choke/ 
> suffocate or die. Absolutely horrible time for us.
> However, now that is not the case, what we have is a night owl. She  
> never goes to bed before 3.30am! No matter what we do or say, she is  
> use to staying awake long hours. She doesn't need or have allot of  
> sleep. She has created her own monster. She realises it is anti- 
> social and not normal to be up all night every night. But that's how  
> it goes. She is difficult to travel with but at 25 we have to  
> realise she has to live her own life. This all started back as a bub  
> when she was "afraid" to go to sleep.
> At the time when she was so ill, there really wasn't anyone who  
> could assist us, with all the sleep issues and we were very stressed.
> Good luck ladies. I think you are doing an amazing job.
> Oh, I just want to say something else. With Lauren turning 25 on  
> Sunday. well. I never thought she'd make it and I never thought I  
> would either.  We have both made it. I feel she has been in my life  
> for the 60 years I have been here. I can't remember life without  
> her, she has had such a huge impact on me. I am sure she was joined  
> to my hip way way way back! Amazing really....(am I alone here?)
>
> Maureen
> ----- Original Message -----
> From: Family Voices
> To: familyvoices at inpress.pledgonline.com
> Sent: Friday, June 05, 2009 9:39 AM
> Subject: Re: FV: Hi Gina..re Mac and sleep
>
> Hi Gina
>
> Do you know why Mac does not sleep?  Dumb question I know but my  
> brain only works in small steps.  Probably from old age, sleepless  
> nights and too many red wines.
>
> Anyway, from what I have read quickly is, if you sat or sit up with  
> Mac he is happy and then day light comes and he sleeps is that right.?
>
> I have a bit of experience too in this area, Sarah had Sleep apnea  
> in a big way when she was littler I don?t think they called it that  
> then but the long and short was when she went into REM her airways  
> would collapse she would not be able to breathe the brain would tell  
> her to wake up it then the brain told her not to go to sleep.
> I have a fantastic Respiratory Specialist who I used to call God in  
> those days he worked in a catholic hospital so that was big he was  
> also very pleasing on the eye so that made the sleepless nights  
> bearable. Ha Ha
>
> I won?t go into our journey unless you think is worthwhile but more  
> than happy if you think it could be of help.  One thing we did  
> journey down was tonsils out at 6 months bloody terrible but I  
> trusted the persons so I used the gut instinct and it come thru  
> along with a whole host of other stuff.
>
> Hang in there I too think you are doing an amazing job and Mac  
> sounds like a star.
> 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: Tuesday, June 02, 2009 9:30 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Hi Gina..re Mac and sleep
>
> Jaquie
>
> Ahhh, thank you, thank you? I had forgotten about Cal/Mag sups but  
> not sure I knew to combine with the Vit D so that is great info.
>
> We tried on a number of occasions to get the info on them and the go  
> ahead from Doctors but for a long time never had any willing  
> supporters.  Eventually we did get a mag/cal combo in a powdered  
> form which I still have in the cupboard.  We stopped when we went  
> onto an elimination diet of sorts and I never reinstated them.    We  
> changed his eating around so at night he has bananas, egg and  
> porridge as there is some natural melatonin in both bananas and oats  
> and eggs are supposedly meant to help increase tryptophan levels and  
> subsequently increase serotonin production.  Thank you for reminding  
> me ? I will check that out with the Vit D combo information and see  
> what regime I can implement.
>
> We used to do a lettuce juice tube feed at night (lettuce has  
> natural opiates) and it worked occasionally but not enough to make  
> it an ongoing regime ? more pain than gain (until I get a really  
> great grinding juicer? still saving up for that one).
>
> The other supplement I was going to find out about was 5-HTP which  
> is apparently a tryptophan supplement to help with that serotonin  
> production I have seen some of the information around ADHD talk  
> about that ? don?t even know if it is available in Australia as it  
> has only come to my attention as a possible thing to investige in  
> the last fortnight.
>
> Apparently (courtesy of some kinesiology testing by a GP in Sydney  
> who I didn?t? return to as she charges by the minute!!!) he doesn?t  
> have any food allergies or intolerances but supposedly does have  
> sensitivities to chlorine and formaldehyde.  Chlorine isn?t a  
> problem except for summer when we go swimming as we aren?t on town  
> water.  Formaldehyde on the other hand could be a contributor as in  
> my wisdom of better insulation in his bedroom I laid a plywood floor  
> over the existing flooring and have a number of cupboards in his  
> room that are Ikea varieties, both the ply and laminated cupboards  
> would be giving off formaldehyde gasses.
>
> We are considering moving him to a different room to see if that  
> makes any difference ? just need to decide whether I need to lift up  
> the foam tiled rubber flooring for the same reason.  I have one  
> friend who knows a lot more than me about plants also researching to  
> see if there is benefit in certain varieties of indoor plants that  
> are suitable for bedrooms that would absorb any of those chemical  
> gasses ? ha ha? as I indicated we are really getting to the pointy  
> end of options.  Sometimes I just laugh at the options we are at  
> they sometimes seem so totally ?out there?.
>
> Surgery might be an option down the track in a few years if we are  
> still having issues.  We have looked at surgery options in the past  
> but our problem to date is until he gets mouth breathing as a  
> consistent we can?t risk taking adenoids as currently they act as a  
> shelf stopping any food getting stuck up his nose ? was more of a  
> problem when he was a projectile vom-monster than now, but there is  
> still that issue if he gets anything blocking it he could get into  
> real trouble.  We are reluctant to remove tonsils as they are not  
> oversize, doesn?t get any infections in them and currently they  
> assist in providing some additional structure to the otherwise  
> compromised physical strength of his neck.  I am fairly confident in  
> the physical therapy we do that we will eventually get these changes  
> to all this nasal/neck/jaw area (if I just push it along a bit more)
>
> Mac doesn?t have epilepsy so not sure if there are other options to  
> consider.  The brain injury was diffuse damage to every part so the  
> lack of epilepsy is quite surprising, but boy, do I love being out  
> of the grips of the neurologists!
>
> One other therapy we will consider finding out more about is the  
> light therapy.  As I understand it you have a light with certain  
> lumens or something that is on for set times during the day with the  
> goal being to again stop the release of melatonin during the day ? I  
> am not sure if this would even be doable, particularly with school,  
> so it is way down the list of options at this stage.
>
> Seemingly the benefits of sleep deprivation mean you get to research  
> sleep deprivation quite significantly.  Mac used be such a toad that  
> Shawn would shift to a different room, I?d put the light and tv on  
> and prop Mac up in the corner of the bed so he could happy watch  
> inappropriate TV shows ?glaarring? with pleasure at getting his own  
> way yet again, and I would go and get the computer, do my work/ 
> payroll etc at 3am sitting next to Mac in bed and then poke around  
> on the internet for any information I could find until the nocturnal  
> child decided it was daytime and therefore an appropriate time to go  
> to sleep - ugh.
>
> Mac is unwell at the moment with a really bad cold (might even be  
> Boy Flu they way he has been groaning and moaning with it).   
> Funnily, whenever we ask him if he is getting better he feigns a  
> ?bad cough? with a sly grin or evil glint in his eye.  Hmmm, he can  
> have one more day off school then it?s back to the grindstone for him.
>
> Cheers
> Gina
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Tuesday, 2 June 2009 6:38 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Hi Gina..re Mac and sleep
>
> Wow...you guys have been through a lot and worked out a heap of  
> strategies. This kind of challenge for me is what parents miss out  
> getting support with...most people just have no idea about the  
> complexity of what we deal with. I hope you know how awesome you are.
>
> My experience is with Angelman...where again it seems to be a  
> magical combination of strategies which work. There are two I can  
> offer which you haven?t listed:
>
> 1.       Calcium/magnesium/vitamin d supplements. This was the magic  
> formula for Eli to start sleeping through the night. Cal/mag do a  
> number of things from being a mild anti-epileptic /calming factor  
> for our nervous system, to helping tight muscles relax their tone.  
> Given that this is a challenge for Mac it could be worth a try. See  
> your GP for recommended doses for a little kid...it will be around  
> 800mg Cal/400mg mag plus the appropriate amount of Vit D. These  
> three nutrients work together and you can?t absorb/make one work  
> without the other. I?m no longer especially into ?natural?  
> therapies...there is quite a bit of mainstream research confirming  
> the significance of these three nutrients...and the common nature of  
> deficiencies in them. Eli?s endocrinologist said he?d like all  
> teenagers to be on this combination, they are so important and so  
> much bone is laid down in teen years. The data shows that where even  
> young people have intellectual disabilities, the rates of  
> osteoporosis are much higher, so good general practice for our kids.  
> Having a teenager with severe osteo I can tell you it isn?t a fun  
> outsome.
> Anyway....Eli went from sleeping for about 90 minutes at a time at  
> age 3 to sleeping 8-12 hours a night after just a few days on this  
> combination. It doesn?t help all kids, but is worth a try.
> 2.       The breathing issue is one which is common in angelman  
> too...and surgery gets the best results. This may sound extreme, but  
> I have seen so many kids do so much better...in terms of sleep,  
> health and cognitive function after having adenoids and/or tonsils  
> removed. I think it is early days for Mac to be considering this,  
> but something you might want to think about at some stage. Again...I  
> am very anti surgery...but so many families have had such a huge  
> improvement in quality of life where there is a significant problem.  
> If I could have my time over, I?d have this looked at for Eli. If  
> you wanted to email with other parents who had this surgery done on  
> their young children I could put you in touch.
> 3.       Does Mac have epilepsy? There are some other/different  
> strategies if this is the case, perhaps.
>
> I?d love to know if any of the above could help. I think you are  
> awesome even being up for this discussion when you are long term  
> sleep deprived.
>
> Jaquie
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Monday, 1 June 2009 7:20 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Hi Gina..re Mac and sleep
>
> Jaquie
>
> Yes please, I am always keen to hear anything on sleep.
>
> I have one other non-medication combo I think I can try that I know  
> of, but maybe haven?t exhausted all avenues after all.  Still have  
> some music options to try, then some bed/mattress options ? although  
> beds/mattresses are the expensive things to have ?not work? so they  
> are my last resort.
>
> There are a few reasons we think Mac doesn?t sleep including any of  
> the following:
> -   cortical vision blindness meaning he may not be getting enough  
> daylight brain messaging to inhibit the release of melatonin during  
> the day then there isn?t a good enough supply to get him through the  
> night
> -   same deal with the production of serotonin ie not enough to keep  
> him asleep through the night.
> -   he is a nose breather so any nasal congestion causes him to get  
> very stressed because he can?t physically breath through his mouth  
> without significant difficultly ? we used to wonder why he coughed  
> all night in the winter months till we worked out that was the only  
> way he could actually breathe he had to rely on the coughing  
> propulsion of air to allow the flow in and out since he couldn?t  
> mouth breathe (gave back our parents of the year award for that one  
> ha ha).  As we continue to get gains in his physical structure  
> around his nose, jaw etc I expect this to improve to allow him to  
> return to both nose/mouth breathing like we do ? just doesn?t help  
> him in the interim period.
> -   he is so incredibly tight in his muscles he turns into a pretzel  
> and is totally uncomfortable after a sleep stint of three-four hours  
> no matter what position you put him in.
> -   he is naughty ? he cries for attention and is totally devastated  
> until you touch or speak to him, then he grins the biggest  
> naughtiest grin ? ugh  It has improved however, he used to poke his  
> tongue out and make himself gag and then projectile vomit for  
> attention until we managed to remove the projectile vomiting out of  
> his ?list of talents?.
> -   he used to get very stressed by the dark and quiet.  He used to  
> only cope if the lights were on and the tv on ? we have managed to  
> wean him out of that by using the melatonin supplements and some  
> white noise ? now he copes pretty well regardless.
> -   He hits his peak interactive period around 8pm onwards and being  
> selfish parents we hate missing that part of his life, we love  
> hearing the new sounds, enjoying the increased level of alertness  
> and awareness and interaction so we probably have let him stay up  
> too late for too many years (although there is research to show  
> stroke patients do their best learning in the evening hours as their  
> bodies take longer to get certain hormones etc out of their system  
> through the day so there may be something in that aspect considering  
> Mac?s bran injury probably has some similar components) ? but mostly  
> I think it is us wanting to enjoy him in that moment.
> -   On the nights we have used valergan he has slept all night and  
> some nights only being rolled in the early hours of the morning but  
> not being any more uncomfortable when he wakes up, so not sure what  
> that tells us.  We wondered whether a memory foam mattress or a  
> water bed could be beneficial for him.
>
> As you can see we haven?t done very well narrowing the list of  
> potential contributors down so feel free to share away.  While the  
> sleep deprivation is debilitating for us and him, the difference in  
> him when he has had the full night sleep albeit ?valergan? enhanced  
> to combat his recent hayfever and sinus infections he is noticeably  
> improved in his alertness, awareness and interactivity ? he needs us  
> to keep on trying to find answers to the sleep issue for him.
>
> 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: Monday, 1 June 2009 7:03 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: FV: Hi Gina..re Mac and sleep
>
> Hi Gina, and folks
>
> I am at a conference and trying to catch up on my emails during the  
> boring bits..so far got rid of more than 1000 of them and feeling  
> smug!
>
> Gina, I only just finished reading your post below, and wondered if  
> you wanted to talk about sleep. Do you know why Mac doesn?t sleep?  
> We went through the whole sleep disorder thing with Eli...angelman  
> is notoriously difficult in terms of sleep and I might know some  
> stuff you haven?t tried/heard about...let me know if you are  
> interested in discussing. I reckon sleep deprivation is one of the  
> most difficult things us parents have to deal with.
>
> Jaquie J
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Monday, 4 May 2009 9:37 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
>
> Thanks Catherine & Meg
>
> Catherine, That is great information? thank you.  I do want all of  
> that for every person (of course with the added benefit of it being  
> fully accessible with built in discreet ceiling tracking, automatic  
> wider doors & taps, Japanese style bidet toilets, fully accessible  
> bathrooms with turning circles and lifts ? so that an otherwise  
> unlikely candidate for independence has the best shot at  
> independence).  Mental note to self? must change Australian Building  
> Standards when time permits?
>
> And I can see how Young Care is different to that model  but still  
> don?t know what to wish for when it comes to those too young to be  
> in aged care facilities and who have nowhere else to go, or for  
> those imprisoned in their homes because, through no fault of their  
> own, true access to their community has been hard to achieve and I  
> guess my na?ve belief in all this is that by Young Care providing a  
> middle ground for these people they can then redevelop  
> relationships, create friendships and then possibly choose to move  
> on from that model.    It is a very happy shiny place in my world ?  
> I can often assume things will simply exist when they don?t.
>
> BUT you might be pleased to know we have just taken a very big step  
> for us, and only agreed to because I have taken what you have all  
> said very seriously.
>
> We have to attend a birthday party in Wagga this weekend and while  
> we wanted to attend the party without Mac we still wanted him over  
> in Wagga for the rest of the weekend.  So, our friends in a nearby  
> town (Mangoplah) are going to look after him on Saturday night.   
> This is huge from our perspective ? we don?t ask friends to babysit-  
> mostly because Mac simply just doesn?t sleep but also because he  
> just isn?t a disruptive child ? he is only hard work over night so  
> he is easy to take out and about with us.  I feel a bit of a fake as  
> he has been a little unwell and we have had to revert to some  
> medication for him for the first time in 5 years and the slightly  
> pleasant side effect is that it does make him sleep a little better  
> ? at least enough that I don?t feel like these friends will be  
> expected to pull an ?all-nighter? having to sit up with him the  
> entire night.
>
> So thank you all for giving me the courage to do this ? even if it  
> is with performance enhancing drugs and the likely significant  
> financial cost to us in red wine when we stay with them for the next  
> night.  I will remember to chant? ?I have no guilt, this is normal &  
> natural? whenever I feel myself slipping into that ?guilt trap?.
>
> Meg, thanks for your flippant throw away line about the ?carers  
> report?.  I haven?t even begun to read it ? still rumbling with  
> school stuff.  But thanks for the impetus for great conversation/ 
> comments.
>
> Cheers All
>
> Gina
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Monday, 4 May 2009 6:19 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
>
> Hi there,
> Just about to switch off computer and go home, but thought I would  
> add another two bobs worth to this thread.
>
> This is a abstract taken from a powerpoint presentation that was  
> given in 2007 to state funded advocacy agencies in NSW. It was part  
> of a paper that was developed to assist advocates in their arguments  
> against redevelopment of institutions and the introduction of so  
> called ?innovative options? like ?villages?, and ?cluster houses?.  
> This is the difference between what you have identified Gina ie the  
> luxury over 50?s developments and what people with disability will  
> get....
>
> Response to contemporary standards claim (2)
> Characteristics of village style accommodation for people without  
> disabilities
> ?   Used by a wide variety of people of all ages, gender, ethnicity  
> and capacity
> ?   Residents have ownership or tenancy rights (They cannot be  
> arbitrarily relocated from one unit to another or be thrown out)
> ?   They live there by choice
> ?   They can come and go as they choose
> ?   They have control over their lifestyle (what to wear, what to  
> eat, when to go to bed etc)
> ?   They can make unquestioned risky decisions
> ?   They have control over their financial arrangements/budget
> ?   They can choose who they want to live with and be friends with
> ?   They can choose their recreational activities
> ?   They choose where, when and how they work
> ?   They can move out when they choose.
>
> (This slide is courtesy of Anne Elysee)
>
>
> Catherine
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Monday, 4 May 2009 5:49 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
>
> Thanks Libby
> I am happy to read anything anyone has to say.  As I said in my post  
> this is an area I get very confused about and am trying to  
> understand more about it.  Points I raise aren?t necessarily  
> something I would choose to do but I want to make sure I understand  
> motivations behind choices people make to ensure I don?t deny anyone  
> their choices (provided as Anita says they are made after being  
> fully aware of the issues).  And therefore they are things I want to  
> see discussed and I will never get offended by anything anyone has  
> to say.
>
> I also know I don?t have a really good grasp of the variety of  
> living arrangement people choose.  For example, there has been the  
> recent increase in luxury housing developments for the over 50s ? I  
> assume from that there must be a market and therefore from that I  
> must accept that some people like living in that type of community  
> where there is less age diversity.  I live on the family farm ?  
> there are three families on our farm ? my sister?s family and my  
> parents and us, the adjoining 3 farms are all my aunts, uncles,  
> cousins etc where there are 7 families.  My son, Mac is sixth  
> generation on this property ? so I am mindful we have a pretty safe  
> haven at this stage of our lives and am aware I need to understand  
> more about why people choose to live where and how they do and also  
> be sure that just because this is my safe haven it could be very  
> isolating for Mac if we aren?t smart about his options for the future.
>
> Please keep any conversations and insights around this issue going ?  
> I love it all and appreciate all everyone has to say.
>
> Cheers
> Gina
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Monday, 4 May 2009 4:30 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
>
> It's interesting this thread. I wanted to comment on families being  
> too exhausted to fight for anything more than their survival, and  
> this makes the possibility of institutions coming back more likely.  
> However the conversation seems to have moved on real fast!!! It's  
> great really. Gina's post I think could do with some discussion - so  
> I'll ponder on what she has said and perhaps post again.
>
> Anywho
>
> It's interesting in my work, I find that families get really  
> energised (despite their hectic, exhausting etc etc lives) when they  
> are working on things that are actually exciting, will bring meaning  
> to their children's lives and are life-giving or life-affirming (in  
> Kendrick's words). So people can find energy or can re-gain energy  
> when the work is actually energising. In my work it has been  
> interesting to see what parents get energised about. They are things  
> like
>
>  - all the work it takes to get their kid to be involved in a youth  
> group. This involves meetings, training, writing information,  
> liaising with leaders and assistants. It has now expanded with this  
> parent interested in talking to schools and other youth centres  
> about how they can get involved
>  - assisting their son/daughter get a real job. From total  
> depression about their son being out of work since school -  
> passivity when we first met, given up, not knowing what to do. We  
> found an opportunity and then it was "what can I do to assist here?".
>  - wanting to connect to other families interested in governing and  
> running their own supports.
>  - working on valued roles in general
>  - teaching others. Speaking at conferences and lectures and  
> assisting others to learn.
>
> and so on
>
> I think what I'm saying is that
>  - we should assume that even exhausted people can find energy to  
> work on things they are truly energised about. It's up to us to ask  
> the question of what would energise, excite and interest them? This  
> moves from buying into the passivity discourse and actually doing  
> something about it. By doing this we are then tackling the re- 
> emergence of institutionalisation head on.
>  - we can structure things so that this actually happens. The system  
> that makes these exhausted people can also unmake them with some  
> different questions and different approaches.
>
> All the endless meetings about 'lack of respite' and 'carers burden'  
> and 'no money in the system', 'unmet need' etc etc. These are  
> important political issues but can also serve to make people victims  
> and instill inertia.
>
> Libby
>
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From familyvoices at inpress.pledgonline.com  Fri Jun  5 01:31:47 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 18:31:47 +1000
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>
Message-ID: <7tb87v$b18smb@ipmail01.adl6.internode.on.net>

Maureen, it is really hard to remember life BC (before children) for most
people (and we are only six years in with Mac), but when there is a child
with additional needs in the mix then I think it is even more marked.  Shawn
and I often remark about how much time we must have wasted in our previous
life ? not to mention how much we would have missed out on learning
 
 
Sleep (or lack there of) is an issue that doesn?t get as much ?recognition?
as it should.  I know in the carer review they had a while back my comment
on respite was that if it is to be available it has to meet the needs of
those seeking it.  The only type of respite we would have been interested in
to date would have been the ability to drop Mac off to a ?slumber party?
type respite (which don?t exist) where we would drop him off after dinner,
pick him up before breakfast and not care whether he slept or not as long as
WE had the luxury of some uninterrupted sleep every now and then.  We would
have been happy to pay for this as a babysitting service (maybe subsidized)
but figured others could pay for the convenience of a place like this eg
shift workers, families without large networks, families wanting to go out
together eg many weddings etc are no kids events these days, it would be
nice to have an option occasionally where you can all go out as adults
without kids and not tap into your extended family networks.
 
In my further thinking around this I guess I have changed a little in that I
think with the right supports from early on we could have had more people
willing to put their hands up as babysitters and this might not be a
necessary requirement and/or desire
 then again, sometimes it is nice just
to have the ability to pay for a service ? no strings attached.
 
We used to joke if only we could find a babysitters club made up of those
with insomnia ? I think that falls under the banner of taking advantage

*sigh*
 
Mac seems to be on the mend from his head cold ? he managed to score the
whole week of school courtesy of a nose that just wouldn?t stop running ?
doesn?t seem human that anyone that size could create so much crud.  
 
Cheers
Gina
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 10:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
HI Jane/Gina
Yes Mac does sound like a star and so do you both!
I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.
Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.
It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.
However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.
At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.
Good luck ladies. I think you are doing an amazing job.
Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)
 
Maureen
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Friday, June 05, 2009 9:39 AM
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Hi Gina
 
Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  
 
Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?
 
I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  
I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha
 
I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.
 
Hang in there I too think you are doing an amazing job and Mac sounds like a
star.
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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  
 
We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  
 
We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).
 
The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.
 
Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  
 
We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.
 
Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)
 
Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!
 
One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.
 
Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.
 
Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.
 
My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:
 
1. Calcium/magnesium/vitamin d supplements. This was the magic formula for
Eli to start sleeping through the night. Cal/mag do a number of things from
being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.
Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.
2. The breathing issue is one which is common in angelman too...and surgery
gets the best results. This may sound extreme, but I have seen so many kids
do so much better...in terms of sleep, health and cognitive function after
having adenoids and/or tonsils removed. I think it is early days for Mac to
be considering this, but something you might want to think about at some
stage. Again...I am very anti surgery...but so many families have had such a
huge improvement in quality of life where there is a significant problem. If
I could have my time over, I?d have this looked at for Eli. If you wanted to
email with other parents who had this surgery done on their young children I
could put you in touch.
3. Does Mac have epilepsy? There are some other/different strategies if this
is the case, perhaps.
 
I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.
 
Jaquie 
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Yes please, I am always keen to hear anything on sleep.
 
I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.
 
There are a few reasons we think Mac doesn?t sleep including any of the
following:
-    cortical vision blindness meaning he may not be getting enough daylight
brain messaging to inhibit the release of melatonin during the day then
there isn?t a good enough supply to get him through the night
-    same deal with the production of serotonin ie not enough to keep him
asleep through the night.
-    he is a nose breather so any nasal congestion causes him to get very
stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.
-    he is so incredibly tight in his muscles he turns into a pretzel and is
totally uncomfortable after a sleep stint of three-four hours no matter what
position you put him in.
-    he is naughty ? he cries for attention and is totally devastated until
you touch or speak to him, then he grins the biggest naughtiest grin ? ugh
It has improved however, he used to poke his tongue out and make himself gag
and then projectile vomit for attention until we managed to remove the
projectile vomiting out of his ?list of talents?.
-    he used to get very stressed by the dark and quiet.  He used to only
cope if the lights were on and the tv on ? we have managed to wean him out
of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.
-    He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.
-    On the nights we have used valergan he has slept all night and some
nights only being rolled in the early hours of the morning but not being any
more uncomfortable when he wakes up, so not sure what that tells us.  We
wondered whether a memory foam mattress or a water bed could be beneficial
for him.
 
As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.
 
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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep
 
Hi Gina, and folks
 
I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!
 
Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Catherine & Meg
 
Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits

 
And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.
 
BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.
 
We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.
 
So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.
 
Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  
 
Cheers All
 
Gina
 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Hi there, 
Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 
 
This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....
 
Response to contemporary standards claim (2)
Characteristics of village style accommodation for people without
disabilities 
*   Used by a wide variety of people of all ages, gender, ethnicity and
capacity
*   Residents have ownership or tenancy rights (They cannot be arbitrarily
relocated from one unit to another or be thrown out)
*   They live there by choice
*   They can come and go as they choose
*   They have control over their lifestyle (what to wear, what to eat, when
to go to bed etc)
*   They can make unquestioned risky decisions
*   They have control over their financial arrangements/budget
*   They can choose who they want to live with and be friends with
*   They can choose their recreational activities
*   They choose where, when and how they work
*   They can move out when they choose.
 
(This slide is courtesy of Anne Elysee)
 
 
Catherine
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Libby
I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  
 
I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.
 
Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.
 
Anywho
 
It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like
 
 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved
 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 
 - wanting to connect to other families interested in governing and running
their own supports.
 - working on valued roles in general
 - teaching others. Speaking at conferences and lectures and assisting
others to learn.
 
and so on
 
I think what I'm saying is that
 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.
 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.
 
All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 
 
Libby 
 

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From familyvoices at inpress.pledgonline.com  Fri Jun  5 02:02:47 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 19:02:47 +1000
Subject: FV: Hi Gina..re Mac and sleep
References: <7tb87v$b18smb@ipmail01.adl6.internode.on.net>
Message-ID: <60FAA48748414C8E8C137642308DDF33@D8XYGK1S>

Gina, do you use any respite at all? like funding? Is there a council service that can assist you in your home?
When Lauren was little, I use to use local council people. They were available one afternoon a week  so I could visit my parents or have a haircut, - and some nights for us to have a life! (sort of!)
They were a mix of good and bad, but we tried them out for some years. We ended up having two wonderful women who recognised Lauren's seizures and assisted her and were used to coming to our home and assisting. Some others were useless and freaked out when Lauren fitted! But we just asked for the good ones.
I apply for respite funding for holidays etc. perhaps this isn't appropriate for you or Mac, but asking about what may assist you might be a good start.
I have some HUGE issues around respite...Like the respite people are always trying to send Lauren away to a "respite house"or send some person she has never met to our home while we go away. All this is absolutely not going to happen, but some funding to assist her to have a holiday with me/her cousins/her brother or sister, would be terrific. 
Anyway, just some thoughts.
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Friday, June 05, 2009 6:31 PM
  Subject: Re: FV: Hi Gina..re Mac and sleep


  Maureen, it is really hard to remember life BC (before children) for most people (and we are only six years in with Mac), but when there is a child with additional needs in the mix then I think it is even more marked.  Shawn and I often remark about how much time we must have wasted in our previous life - not to mention how much we would have missed out on learning. 

   

  Sleep (or lack there of) is an issue that doesn't get as much 'recognition' as it should.  I know in the carer review they had a while back my comment on respite was that if it is to be available it has to meet the needs of those seeking it.  The only type of respite we would have been interested in to date would have been the ability to drop Mac off to a 'slumber party' type respite (which don't exist) where we would drop him off after dinner, pick him up before breakfast and not care whether he slept or not as long as WE had the luxury of some uninterrupted sleep every now and then.  We would have been happy to pay for this as a babysitting service (maybe subsidized) but figured others could pay for the convenience of a place like this eg shift workers, families without large networks, families wanting to go out together eg many weddings etc are no kids events these days, it would be nice to have an option occasionally where you can all go out as adults without kids and not tap into your extended family networks.

   

  In my further thinking around this I guess I have changed a little in that I think with the right supports from early on we could have had more people willing to put their hands up as babysitters and this might not be a necessary requirement and/or desire. then again, sometimes it is nice just to have the ability to pay for a service - no strings attached.

   

  We used to joke if only we could find a babysitters club made up of those with insomnia - I think that falls under the banner of taking advantage. *sigh*

   

  Mac seems to be on the mend from his head cold - he managed to score the whole week of school courtesy of a nose that just wouldn't stop running - doesn't seem human that anyone that size could create so much crud.  

   

  Cheers

  Gina


------------------------------------------------------------------------------

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Friday, 5 June 2009 10:17 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi Gina..re Mac and sleep

   

  HI Jane/Gina

  Yes Mac does sound like a star and so do you both!

  I just wish I had all this support and information when Lauren was little. She will be 25 on Sunday.

  Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch pushed her in the pram around the suburbs so the other children (and me) in the house could rest and get some sleep.

  It went on for years not just as a bub. She would fit all night in her sleep and I used to sit beside her so she wouldn't choke/suffocate or die. Absolutely horrible time for us.

  However, now that is not the case, what we have is a night owl. She never goes to bed before 3.30am! No matter what we do or say, she is use to staying awake long hours. She doesn't need or have allot of sleep. She has created her own monster. She realises it is anti-social and not normal to be up all night every night. But that's how it goes. She is difficult to travel with but at 25 we have to realise she has to live her own life. This all started back as a bub when she was "afraid" to go to sleep.

  At the time when she was so ill, there really wasn't anyone who could assist us, with all the sleep issues and we were very stressed.

  Good luck ladies. I think you are doing an amazing job.

  Oh, I just want to say something else. With Lauren turning 25 on Sunday. well. I never thought she'd make it and I never thought I would either.  We have both made it. I feel she has been in my life for the 60 years I have been here. I can't remember life without her, she has had such a huge impact on me. I am sure she was joined to my hip way way way back! Amazing really....(am I alone here?)

   

  Maureen

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Friday, June 05, 2009 9:39 AM

    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Hi Gina

     

    Do you know why Mac does not sleep?  Dumb question I know but my brain only works in small steps.  Probably from old age, sleepless nights and too many red wines.  

     

    Anyway, from what I have read quickly is, if you sat or sit up with Mac he is happy and then day light comes and he sleeps is that right.?

     

    I have a bit of experience too in this area, Sarah had Sleep apnea in a big way when she was littler I don't think they called it that then but the long and short was when she went into REM her airways would collapse she would not be able to breathe the brain would tell her to wake up it then the brain told her not to go to sleep.  

    I have a fantastic Respiratory Specialist who I used to call God in those days he worked in a catholic hospital so that was big he was also very pleasing on the eye so that made the sleepless nights bearable. Ha Ha

     

    I won't go into our journey unless you think is worthwhile but more than happy if you think it could be of help.  One thing we did journey down was tonsils out at 6 months bloody terrible but I trusted the persons so I used the gut instinct and it come thru along with a whole host of other stuff.

     

    Hang in there I too think you are doing an amazing job and Mac sounds like a star.

    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: Tuesday, June 02, 2009 9:30 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Jaquie

     

    Ahhh, thank you, thank you. I had forgotten about Cal/Mag sups but not sure I knew to combine with the Vit D so that is great info.  

     

    We tried on a number of occasions to get the info on them and the go ahead from Doctors but for a long time never had any willing supporters.  Eventually we did get a mag/cal combo in a powdered form which I still have in the cupboard.  We stopped when we went onto an elimination diet of sorts and I never reinstated them.    We changed his eating around so at night he has bananas, egg and porridge as there is some natural melatonin in both bananas and oats and eggs are supposedly meant to help increase tryptophan levels and subsequently increase serotonin production.  Thank you for reminding me - I will check that out with the Vit D combo information and see what regime I can implement.  

     

    We used to do a lettuce juice tube feed at night (lettuce has natural opiates) and it worked occasionally but not enough to make it an ongoing regime - more pain than gain (until I get a really great grinding juicer. still saving up for that one).

     

    The other supplement I was going to find out about was 5-HTP which is apparently a tryptophan supplement to help with that serotonin production I have seen some of the information around ADHD talk about that - don't even know if it is available in Australia as it has only come to my attention as a possible thing to investige in the last fortnight.

     

    Apparently (courtesy of some kinesiology testing by a GP in Sydney who I didn't' return to as she charges by the minute!!!) he doesn't have any food allergies or intolerances but supposedly does have sensitivities to chlorine and formaldehyde.  Chlorine isn't a problem except for summer when we go swimming as we aren't on town water.  Formaldehyde on the other hand could be a contributor as in my wisdom of better insulation in his bedroom I laid a plywood floor over the existing flooring and have a number of cupboards in his room that are Ikea varieties, both the ply and laminated cupboards would be giving off formaldehyde gasses.  

     

    We are considering moving him to a different room to see if that makes any difference - just need to decide whether I need to lift up the foam tiled rubber flooring for the same reason.  I have one friend who knows a lot more than me about plants also researching to see if there is benefit in certain varieties of indoor plants that are suitable for bedrooms that would absorb any of those chemical gasses - ha ha. as I indicated we are really getting to the pointy end of options.  Sometimes I just laugh at the options we are at they sometimes seem so totally 'out there'.

     

    Surgery might be an option down the track in a few years if we are still having issues.  We have looked at surgery options in the past but our problem to date is until he gets mouth breathing as a consistent we can't risk taking adenoids as currently they act as a shelf stopping any food getting stuck up his nose - was more of a problem when he was a projectile vom-monster than now, but there is still that issue if he gets anything blocking it he could get into real trouble.  We are reluctant to remove tonsils as they are not oversize, doesn't get any infections in them and currently they assist in providing some additional structure to the otherwise compromised physical strength of his neck.  I am fairly confident in the physical therapy we do that we will eventually get these changes to all this nasal/neck/jaw area (if I just push it along a bit more)

     

    Mac doesn't have epilepsy so not sure if there are other options to consider.  The brain injury was diffuse damage to every part so the lack of epilepsy is quite surprising, but boy, do I love being out of the grips of the neurologists!

     

    One other therapy we will consider finding out more about is the light therapy.  As I understand it you have a light with certain lumens or something that is on for set times during the day with the goal being to again stop the release of melatonin during the day - I am not sure if this would even be doable, particularly with school, so it is way down the list of options at this stage.

     

    Seemingly the benefits of sleep deprivation mean you get to research sleep deprivation quite significantly.  Mac used be such a toad that Shawn would shift to a different room, I'd put the light and tv on and prop Mac up in the corner of the bed so he could happy watch inappropriate TV shows 'glaarring' with pleasure at getting his own way yet again, and I would go and get the computer, do my work/payroll etc at 3am sitting next to Mac in bed and then poke around on the internet for any information I could find until the nocturnal child decided it was daytime and therefore an appropriate time to go to sleep - ugh.

     

    Mac is unwell at the moment with a really bad cold (might even be Boy Flu they way he has been groaning and moaning with it).  Funnily, whenever we ask him if he is getting better he feigns a 'bad cough' with a sly grin or evil glint in his eye.  Hmmm, he can have one more day off school then it's back to the grindstone for him.  

     

    Cheers

    Gina


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Tuesday, 2 June 2009 6:38 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Wow...you guys have been through a lot and worked out a heap of strategies. This kind of challenge for me is what parents miss out getting support with...most people just have no idea about the complexity of what we deal with. I hope you know how awesome you are.

     

    My experience is with Angelman...where again it seems to be a magical combination of strategies which work. There are two I can offer which you haven't listed:

     

    1. Calcium/magnesium/vitamin d supplements. This was the magic formula for Eli to start sleeping through the night. Cal/mag do a number of things from being a mild anti-epileptic /calming factor for our nervous system, to helping tight muscles relax their tone. Given that this is a challenge for Mac it could be worth a try. See your GP for recommended doses for a little kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of Vit D. These three nutrients work together and you can't absorb/make one work without the other. I'm no longer especially into 'natural' therapies...there is quite a bit of mainstream research confirming the significance of these three nutrients...and the common nature of deficiencies in them. Eli's endocrinologist said he'd like all teenagers to be on this combination, they are so important and so much bone is laid down in teen years. The data shows that where even young people have intellectual disabilities, the rates of osteoporosis are much higher, so good general practice for our kids. Having a teenager with severe osteo I can tell you it isn't a fun outsome.

    Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to sleeping 8-12 hours a night after just a few days on this combination. It doesn't help all kids, but is worth a try.

    2. The breathing issue is one which is common in angelman too...and surgery gets the best results. This may sound extreme, but I have seen so many kids do so much better...in terms of sleep, health and cognitive function after having adenoids and/or tonsils removed. I think it is early days for Mac to be considering this, but something you might want to think about at some stage. Again...I am very anti surgery...but so many families have had such a huge improvement in quality of life where there is a significant problem. If I could have my time over, I'd have this looked at for Eli. If you wanted to email with other parents who had this surgery done on their young children I could put you in touch.

    3. Does Mac have epilepsy? There are some other/different strategies if this is the case, perhaps.

     

    I'd love to know if any of the above could help. I think you are awesome even being up for this discussion when you are long term sleep deprived.

     

    Jaquie 

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 1 June 2009 7:20 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Jaquie

     

    Yes please, I am always keen to hear anything on sleep.

     

    I have one other non-medication combo I think I can try that I know of, but maybe haven't exhausted all avenues after all.  Still have some music options to try, then some bed/mattress options - although beds/mattresses are the expensive things to have 'not work' so they are my last resort.

     

    There are a few reasons we think Mac doesn't sleep including any of the following:

    -    cortical vision blindness meaning he may not be getting enough daylight brain messaging to inhibit the release of melatonin during the day then there isn't a good enough supply to get him through the night

    -    same deal with the production of serotonin ie not enough to keep him asleep through the night.

    -    he is a nose breather so any nasal congestion causes him to get very stressed because he can't physically breath through his mouth without significant difficultly - we used to wonder why he coughed all night in the winter months till we worked out that was the only way he could actually breathe he had to rely on the coughing propulsion of air to allow the flow in and out since he couldn't mouth breathe (gave back our parents of the year award for that one ha ha).  As we continue to get gains in his physical structure around his nose, jaw etc I expect this to improve to allow him to return to both nose/mouth breathing like we do - just doesn't help him in the interim period.

    -    he is so incredibly tight in his muscles he turns into a pretzel and is totally uncomfortable after a sleep stint of three-four hours no matter what position you put him in.

    -    he is naughty - he cries for attention and is totally devastated until you touch or speak to him, then he grins the biggest naughtiest grin - ugh  It has improved however, he used to poke his tongue out and make himself gag and then projectile vomit for attention until we managed to remove the projectile vomiting out of his 'list of talents'.

    -    he used to get very stressed by the dark and quiet.  He used to only cope if the lights were on and the tv on - we have managed to wean him out of that by using the melatonin supplements and some white noise - now he copes pretty well regardless.

    -    He hits his peak interactive period around 8pm onwards and being selfish parents we hate missing that part of his life, we love hearing the new sounds, enjoying the increased level of alertness and awareness and interaction so we probably have let him stay up too late for too many years (although there is research to show stroke patients do their best learning in the evening hours as their bodies take longer to get certain hormones etc out of their system through the day so there may be something in that aspect considering Mac's bran injury probably has some similar components) - but mostly I think it is us wanting to enjoy him in that moment.

    -    On the nights we have used valergan he has slept all night and some nights only being rolled in the early hours of the morning but not being any more uncomfortable when he wakes up, so not sure what that tells us.  We wondered whether a memory foam mattress or a water bed could be beneficial for him.

     

    As you can see we haven't done very well narrowing the list of potential contributors down so feel free to share away.  While the sleep deprivation is debilitating for us and him, the difference in him when he has had the full night sleep albeit 'valergan' enhanced to combat his recent hayfever and sinus infections he is noticeably improved in his alertness, awareness and interactivity - he needs us to keep on trying to find answers to the sleep issue for him.

     

    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: Monday, 1 June 2009 7:03 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: FV: Hi Gina..re Mac and sleep

     

    Hi Gina, and folks

     

    I am at a conference and trying to catch up on my emails during the boring bits..so far got rid of more than 1000 of them and feeling smug!

     

    Gina, I only just finished reading your post below, and wondered if you wanted to talk about sleep. Do you know why Mac doesn't sleep? We went through the whole sleep disorder thing with Eli...angelman is notoriously difficult in terms of sleep and I might know some stuff you haven't tried/heard about...let me know if you are interested in discussing. I reckon sleep deprivation is one of the most difficult things us parents have to deal with.

     

    Jaquie J

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 9:37 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    Thanks Catherine & Meg

     

    Catherine, That is great information. thank you.  I do want all of that for every person (of course with the added benefit of it being fully accessible with built in discreet ceiling tracking, automatic wider doors & taps, Japanese style bidet toilets, fully accessible bathrooms with turning circles and lifts - so that an otherwise unlikely candidate for independence has the best shot at independence).  Mental note to self. must change Australian Building Standards when time permits.

     

    And I can see how Young Care is different to that model  but still don't know what to wish for when it comes to those too young to be in aged care facilities and who have nowhere else to go, or for those imprisoned in their homes because, through no fault of their own, true access to their community has been hard to achieve and I guess my na?ve belief in all this is that by Young Care providing a middle ground for these people they can then redevelop relationships, create friendships and then possibly choose to move on from that model.    It is a very happy shiny place in my world - I can often assume things will simply exist when they don't.

     

    BUT you might be pleased to know we have just taken a very big step for us, and only agreed to because I have taken what you have all said very seriously.

     

    We have to attend a birthday party in Wagga this weekend and while we wanted to attend the party without Mac we still wanted him over in Wagga for the rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going to look after him on Saturday night.  This is huge from our perspective - we don't ask friends to babysit- mostly because Mac simply just doesn't sleep but also because he just isn't a disruptive child - he is only hard work over night so he is easy to take out and about with us.  I feel a bit of a fake as he has been a little unwell and we have had to revert to some medication for him for the first time in 5 years and the slightly pleasant side effect is that it does make him sleep a little better - at least enough that I don't feel like these friends will be expected to pull an 'all-nighter' having to sit up with him the entire night.

     

    So thank you all for giving me the courage to do this - even if it is with performance enhancing drugs and the likely significant financial cost to us in red wine when we stay with them for the next night.  I will remember to chant. "I have no guilt, this is normal & natural" whenever I feel myself slipping into that 'guilt trap'.

     

    Meg, thanks for your flippant throw away line about the 'carers report'.  I haven't even begun to read it - still rumbling with school stuff.  But thanks for the impetus for great conversation/comments.  

     

    Cheers All

     

    Gina

     


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 6:19 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    Hi there, 

    Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. 

     

    This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called 'innovative options' like 'villages', and 'cluster houses'. This is the difference between what you have identified Gina ie the luxury over 50's developments and what people with disability will get....

     

    Response to contemporary standards claim (2)

    Characteristics of village style accommodation for people without disabilities 

    ?   Used by a wide variety of people of all ages, gender, ethnicity and capacity

    ?   Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out)

    ?   They live there by choice

    ?   They can come and go as they choose

    ?   They have control over their lifestyle (what to wear, what to eat, when to go to bed etc)

    ?   They can make unquestioned risky decisions

    ?   They have control over their financial arrangements/budget

    ?   They can choose who they want to live with and be friends with

    ?   They can choose their recreational activities

    ?   They choose where, when and how they work

    ?   They can move out when they choose.

     

    (This slide is courtesy of Anne Elysee)

     

     

    Catherine

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 5:49 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    Thanks Libby

    I am happy to read anything anyone has to say.  As I said in my post this is an area I get very confused about and am trying to understand more about it.  Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues).  And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say.  

     

    I also know I don't have a really good grasp of the variety of living arrangement people choose.  For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity.  I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families.  My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future.

     

    Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say.

     

    Cheers

    Gina


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 4:30 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again.

     

    Anywho

     

    It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like

     

     - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved

     - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". 

     - wanting to connect to other families interested in governing and running their own supports.

     - working on valued roles in general

     - teaching others. Speaking at conferences and lectures and assisting others to learn.

     

    and so on

     

    I think what I'm saying is that

     - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on.

     - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches.

     

    All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. 

     

    Libby 

     


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From familyvoices at inpress.pledgonline.com  Fri Jun  5 06:08:25 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 23:08:25 +1000
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <60FAA48748414C8E8C137642308DDF33@D8XYGK1S>
Message-ID: <7tb87v$b1f7sj@ipmail01.adl6.internode.on.net>

Hi Maureen
 
I haven?t used any respite yet, only because there hasn?t been a right fit
yet.  The respite people down here were adamant I had to leave the house for
them to come in, and were really strict about what could and couldn?t? be
done ? seemed like too much trouble for me.  That being said when I do
decide to pursue it I have the name of a couple of people who would be a
good fit.  Mac was attending long day care for one day and pre-school for
another so I wasn?t NOT getting a break from him.
 
Because we have been living with Mum and Dad for the last couple of years
while my sister and brother in law build on the farm to free up the spare
house on the farm for us it has been a bit tricky working out how respite
workers could come into the home while we all share our living arrangements.
By the same token Dad is really good with Mac, my mum still works full time
but I have had the luxury of being able to literally leave Mac and race into
town if I need to.
 
I have just received a form from the Spastic Centre to apply for flexible
respite of sorts where I get to choose who/how I use the money ? this is a
new thing they are trying, so I will see whether that works better for us.
 
Within the year we will be back in our own home and I can more easily bring
some respite workers or other in if I felt there was a role for them.
Shawn?s parents have just moved to Nowra within the last month so we now
have 4 grandparents around and hope that might help with options down the
track.  
 
Because we have our own hair and beauty salons I quite happily succumb to my
?weekly? wash/dry with Mac in the salon where the staff have a lovely time
with him.  He loves the buzz of the salon.  Now he is at school it is much
easier I get to do Mac free time in town
 yay.
 
Some of the other areas have much better respite options, eg western nsw
through the spastic centre have true flexible respite where you just apply
for a block of money and spend it as appropriate ? this is only available
for this region ? crazy really.
 
I always found it difficult to apply for respite when I didn?t feel I really
needed it (other than the aforementioned overnight option) when I knew there
were people desperate who couldn?t get it.  Eg a couple who after their own
children were grown adopted 3 children, 2 of whom have significant special
needs were really needing assistance with respite, and couldn?t get anywhere
near the kind of help they needed.  So I have had some philosophical
problems with how it is run down here.  That particular family has returned
to Wagga to live closer to family so I hope they can get some better
supports over there.
 
Ugh on the respite workers always trying to send kids OFF somewhere.  When I
was saying I wanted a slumber party option that was because I could see that
it wouldn?t be just kids with disabilities that could use something like
that so it could be a really cool place to go and be staffed appropriate to
kids needs.  Last I heard in our region there were four overnight ?beds? as
they call them for emergency respite for all adults and children, two of
those beds are taken up full time with DOCS cases ? needless to say, you
need your natural supports in place in case of an emergency for sure.
 
Cheers
Gina
 
 
 
m: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Gina, do you use any respite at all? like funding? Is there a council
service that can assist you in your home?
When Lauren was little, I use to use local council people. They were
available one afternoon a week  so I could visit my parents or have a
haircut, - and some nights for us to have a life! (sort of!)
They were a mix of good and bad, but we tried them out for some years. We
ended up having two wonderful women who recognised Lauren's seizures and
assisted her and were used to coming to our home and assisting. Some others
were useless and freaked out when Lauren fitted! But we just asked for the
good ones.
I apply for respite funding for holidays etc. perhaps this isn't appropriate
for you or Mac, but asking about what may assist you might be a good start.
I have some HUGE issues around respite...Like the respite people are always
trying to send Lauren away to a "respite house"or send some person she has
never met to our home while we go away. All this is absolutely not going to
happen, but some funding to assist her to have a holiday with me/her
cousins/her brother or sister, would be terrific. 
Anyway, just some thoughts.
Maureen
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Friday, June 05, 2009 6:31 PM
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Maureen, it is really hard to remember life BC (before children) for most
people (and we are only six years in with Mac), but when there is a child
with additional needs in the mix then I think it is even more marked.  Shawn
and I often remark about how much time we must have wasted in our previous
life ? not to mention how much we would have missed out on learning
 
 
Sleep (or lack there of) is an issue that doesn?t get as much ?recognition?
as it should.  I know in the carer review they had a while back my comment
on respite was that if it is to be available it has to meet the needs of
those seeking it.  The only type of respite we would have been interested in
to date would have been the ability to drop Mac off to a ?slumber party?
type respite (which don?t exist) where we would drop him off after dinner,
pick him up before breakfast and not care whether he slept or not as long as
WE had the luxury of some uninterrupted sleep every now and then.  We would
have been happy to pay for this as a babysitting service (maybe subsidized)
but figured others could pay for the convenience of a place like this eg
shift workers, families without large networks, families wanting to go out
together eg many weddings etc are no kids events these days, it would be
nice to have an option occasionally where you can all go out as adults
without kids and not tap into your extended family networks.
 
In my further thinking around this I guess I have changed a little in that I
think with the right supports from early on we could have had more people
willing to put their hands up as babysitters and this might not be a
necessary requirement and/or desire
 then again, sometimes it is nice just
to have the ability to pay for a service ? no strings attached.
 
We used to joke if only we could find a babysitters club made up of those
with insomnia ? I think that falls under the banner of taking advantage

*sigh*
 
Mac seems to be on the mend from his head cold ? he managed to score the
whole week of school courtesy of a nose that just wouldn?t stop running ?
doesn?t seem human that anyone that size could create so much crud.  
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 10:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
HI Jane/Gina
Yes Mac does sound like a star and so do you both!
I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.
Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.
It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.
However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.
At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.
Good luck ladies. I think you are doing an amazing job.
Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)
 
Maureen
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Friday, June 05, 2009 9:39 AM
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Hi Gina
 
Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  
 
Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?
 
I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  
I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha
 
I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.
 
Hang in there I too think you are doing an amazing job and Mac sounds like a
star.
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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  
 
We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  
 
We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).
 
The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.
 
Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  
 
We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.
 
Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)
 
Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!
 
One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.
 
Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.
 
Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.
 
My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:
 
1.       Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.
Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.
2.       The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.
3.       Does Mac have epilepsy? There are some other/different strategies
if this is the case, perhaps.
 
I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.
 
Jaquie 
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Yes please, I am always keen to hear anything on sleep.
 
I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.
 
There are a few reasons we think Mac doesn?t sleep including any of the
following:
-          cortical vision blindness meaning he may not be getting enough
daylight brain messaging to inhibit the release of melatonin during the day
then there isn?t a good enough supply to get him through the night
-          same deal with the production of serotonin ie not enough to keep
him asleep through the night.
-          he is a nose breather so any nasal congestion causes him to get
very stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.
-          he is so incredibly tight in his muscles he turns into a pretzel
and is totally uncomfortable after a sleep stint of three-four hours no
matter what position you put him in.
-          he is naughty ? he cries for attention and is totally devastated
until you touch or speak to him, then he grins the biggest naughtiest grin ?
ugh  It has improved however, he used to poke his tongue out and make
himself gag and then projectile vomit for attention until we managed to
remove the projectile vomiting out of his ?list of talents?.
-          he used to get very stressed by the dark and quiet.  He used to
only cope if the lights were on and the tv on ? we have managed to wean him
out of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.
-          He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.
-          On the nights we have used valergan he has slept all night and
some nights only being rolled in the early hours of the morning but not
being any more uncomfortable when he wakes up, so not sure what that tells
us.  We wondered whether a memory foam mattress or a water bed could be
beneficial for him.
 
As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.
 
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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep
 
Hi Gina, and folks
 
I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!
 
Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Catherine & Meg
 
Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits

 
And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.
 
BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.
 
We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.
 
So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.
 
Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  
 
Cheers All
 
Gina
 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Hi there, 
Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 
 
This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....
 
Response to contemporary standards claim (2)
Characteristics of village style accommodation for people without
disabilities 
*         Used by a wide variety of people of all ages, gender, ethnicity
and capacity
*         Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)
*         They live there by choice
*         They can come and go as they choose
*         They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)
*         They can make unquestioned risky decisions
*         They have control over their financial arrangements/budget
*         They can choose who they want to live with and be friends with
*         They can choose their recreational activities
*         They choose where, when and how they work
*         They can move out when they choose.
 
(This slide is courtesy of Anne Elysee)
 
 
Catherine
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Libby
I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  
 
I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.
 
Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.
 
Anywho
 
It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like
 
 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved
 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 
 - wanting to connect to other families interested in governing and running
their own supports.
 - working on valued roles in general
 - teaching others. Speaking at conferences and lectures and assisting
others to learn.
 
and so on
 
I think what I'm saying is that
 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.
 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.
 
All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 
 
Libby 
 

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From familyvoices at inpress.pledgonline.com  Fri Jun  5 07:04:03 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 5 Jun 2009 22:04:03 +0800
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91>
	<66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>
Message-ID: <005e01c9e5e6$7bd64ad0$7382e070$@net.au>

Hey Maureen

 

Have you ever tried the calcium/magnesium/vitamin D combination with Lauren?
Our neuro explained that with some people/kids those night seizures keep
them awake..and that as a mild anti-epileptic this might have been the
reason for eli being so wakeful at night. I guess those myoclonic seizures
most of us have at one time or another falling asleep makes that seem
possible.

 

I guess having had so many conversations with people about the sleep issue I
am a bit cynical about the ?they just don?t need much sleep? theory. This
was the conclusion from the docs with eli but once he started sleeping
?normally? he developed so much faster.

 

The other thing I notice is that often older kids with epilepsy who are on
medication which worked ten years ago aren?t being offered some of the newer
meds...its quite expensive but when eli started taking frisium plus topamax,
his sleep pattern improved again, going from 8 hours consistently to 12
hours plus, and his alertness was amazing. The results of that in terms of
his cognitive ability have been brilliant. The thing is, people with
epilepsy generally need more sleep, not less.

 

I think with our kids the medical folks seem try one or two things and then
stick us in the too hard basket....it has been from other parents that I?ve
learned most of the medical knowledge I needed to make eli?s life as good as
it could be.

 

Sweet dreams folks...I wish a happy sleep to everyone tonight.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 8:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

HI Jane/Gina

Yes Mac does sound like a star and so do you both!

I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.

Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.

It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.

However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.

At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.

Good luck ladies. I think you are doing an amazing job.

Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)

 

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 05, 2009 9:39 AM

Subject: Re: FV: Hi Gina..re Mac and sleep

 

Hi Gina

 

Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  

 

Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?

 

I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  

I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha

 

I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.

 

Hang in there I too think you are doing an amazing job and Mac sounds like a
star.

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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  

 

We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  

 

We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).

 

The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.

 

Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  

 

We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.

 

Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)

 

Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!

 

One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.

 

Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.

 

Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.

 

My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:

 

1.      Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.

Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.

2.      The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.

3.      Does Mac have epilepsy? There are some other/different strategies if
this is the case, perhaps.

 

I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.

 

Jaquie 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Yes please, I am always keen to hear anything on sleep.

 

I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.

 

There are a few reasons we think Mac doesn?t sleep including any of the
following:

-    cortical vision blindness meaning he may not be getting enough daylight
brain messaging to inhibit the release of melatonin during the day then
there isn?t a good enough supply to get him through the night

-    same deal with the production of serotonin ie not enough to keep him
asleep through the night.

-    he is a nose breather so any nasal congestion causes him to get very
stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.

-    he is so incredibly tight in his muscles he turns into a pretzel and is
totally uncomfortable after a sleep stint of three-four hours no matter what
position you put him in.

-    he is naughty ? he cries for attention and is totally devastated until
you touch or speak to him, then he grins the biggest naughtiest grin ? ugh
It has improved however, he used to poke his tongue out and make himself gag
and then projectile vomit for attention until we managed to remove the
projectile vomiting out of his ?list of talents?.

-    he used to get very stressed by the dark and quiet.  He used to only
cope if the lights were on and the tv on ? we have managed to wean him out
of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.

-    He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.

-    On the nights we have used valergan he has slept all night and some
nights only being rolled in the early hours of the morning but not being any
more uncomfortable when he wakes up, so not sure what that tells us.  We
wondered whether a memory foam mattress or a water bed could be beneficial
for him.

 

As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.

 

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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

?   Used by a wide variety of people of all ages, gender, ethnicity and
capacity

?   Residents have ownership or tenancy rights (They cannot be arbitrarily
relocated from one unit to another or be thrown out)

?   They live there by choice

?   They can come and go as they choose

?   They have control over their lifestyle (what to wear, what to eat, when
to go to bed etc)

?   They can make unquestioned risky decisions

?   They have control over their financial arrangements/budget

?   They can choose who they want to live with and be friends with

?   They can choose their recreational activities

?   They choose where, when and how they work

?   They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 


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From familyvoices at inpress.pledgonline.com  Fri Jun  5 15:24:12 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 6 Jun 2009 08:24:12 +1000
Subject: FV: Hi Gina..re Mac and sleep
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91><66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>
	<005e01c9e5e6$7bd64ad0$7382e070$@net.au>
Message-ID: <F17F59AC7A274931BE041A9A0CE2A596@D8XYGK1S>

Hi Jaquie and Gina
Gina, sounds like your options are good with so much family support around you. When all the respite people get the idea that flexible respite is the real answer, we will all get somewhere.
Jaquie, Lauren has had two brain operations. Firstly the corpus callosum resection she had 20 years ago this week! That divided her brain in half and kept the seizures in one area. - Successful for a few years............Then.........she got worse and worse and eventually she had a partial hemispherectomy and had 2/3 of the right side of her brain removed. That was 12 years ago this December. She hasn't had a seizure since. Like a miracle really. She is not on any medication. So most of the things that were relevant in her life pre surgery are not relevant now. Apart from the fact that she has developed some terrible sleep habits. 
I think her main problem with the lack of sleep is, she seems to have developed a habit of being awake. I can't imagine what else it is. She just doesn't get very tired. Do you think the calcium/magnesium/Vit D combo would assist her? Does the medication come as 1 tablet? I take Calcium Vit D as a combo all in one tablet.. Maybe there is one with magnesium as well. Can you tell me more about this? How does it help Eli?
Off to a family wedding this cool Melbourne morning.
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Saturday, June 06, 2009 12:04 AM
  Subject: Re: FV: Hi Gina..re Mac and sleep


  Hey Maureen

   

  Have you ever tried the calcium/magnesium/vitamin D combination with Lauren? Our neuro explained that with some people/kids those night seizures keep them awake..and that as a mild anti-epileptic this might have been the reason for eli being so wakeful at night. I guess those myoclonic seizures most of us have at one time or another falling asleep makes that seem possible.

   

  I guess having had so many conversations with people about the sleep issue I am a bit cynical about the 'they just don't need much sleep' theory. This was the conclusion from the docs with eli but once he started sleeping 'normally' he developed so much faster.

   

  The other thing I notice is that often older kids with epilepsy who are on medication which worked ten years ago aren't being offered some of the newer meds...its quite expensive but when eli started taking frisium plus topamax, his sleep pattern improved again, going from 8 hours consistently to 12 hours plus, and his alertness was amazing. The results of that in terms of his cognitive ability have been brilliant. The thing is, people with epilepsy generally need more sleep, not less.

   

  I think with our kids the medical folks seem try one or two things and then stick us in the too hard basket....it has been from other parents that I've learned most of the medical knowledge I needed to make eli's life as good as it could be.

   

  Sweet dreams folks...I wish a happy sleep to everyone tonight.

   

  Jaquie J

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Friday, 5 June 2009 8:17 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi Gina..re Mac and sleep

   

  HI Jane/Gina

  Yes Mac does sound like a star and so do you both!

  I just wish I had all this support and information when Lauren was little. She will be 25 on Sunday.

  Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch pushed her in the pram around the suburbs so the other children (and me) in the house could rest and get some sleep.

  It went on for years not just as a bub. She would fit all night in her sleep and I used to sit beside her so she wouldn't choke/suffocate or die. Absolutely horrible time for us.

  However, now that is not the case, what we have is a night owl. She never goes to bed before 3.30am! No matter what we do or say, she is use to staying awake long hours. She doesn't need or have allot of sleep. She has created her own monster. She realises it is anti-social and not normal to be up all night every night. But that's how it goes. She is difficult to travel with but at 25 we have to realise she has to live her own life. This all started back as a bub when she was "afraid" to go to sleep.

  At the time when she was so ill, there really wasn't anyone who could assist us, with all the sleep issues and we were very stressed.

  Good luck ladies. I think you are doing an amazing job.

  Oh, I just want to say something else. With Lauren turning 25 on Sunday. well. I never thought she'd make it and I never thought I would either.  We have both made it. I feel she has been in my life for the 60 years I have been here. I can't remember life without her, she has had such a huge impact on me. I am sure she was joined to my hip way way way back! Amazing really....(am I alone here?)

   

  Maureen

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Friday, June 05, 2009 9:39 AM

    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Hi Gina

     

    Do you know why Mac does not sleep?  Dumb question I know but my brain only works in small steps.  Probably from old age, sleepless nights and too many red wines.  

     

    Anyway, from what I have read quickly is, if you sat or sit up with Mac he is happy and then day light comes and he sleeps is that right.?

     

    I have a bit of experience too in this area, Sarah had Sleep apnea in a big way when she was littler I don't think they called it that then but the long and short was when she went into REM her airways would collapse she would not be able to breathe the brain would tell her to wake up it then the brain told her not to go to sleep.  

    I have a fantastic Respiratory Specialist who I used to call God in those days he worked in a catholic hospital so that was big he was also very pleasing on the eye so that made the sleepless nights bearable. Ha Ha

     

    I won't go into our journey unless you think is worthwhile but more than happy if you think it could be of help.  One thing we did journey down was tonsils out at 6 months bloody terrible but I trusted the persons so I used the gut instinct and it come thru along with a whole host of other stuff.

     

    Hang in there I too think you are doing an amazing job and Mac sounds like a star.

    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: Tuesday, June 02, 2009 9:30 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Jaquie

     

    Ahhh, thank you, thank you. I had forgotten about Cal/Mag sups but not sure I knew to combine with the Vit D so that is great info.  

     

    We tried on a number of occasions to get the info on them and the go ahead from Doctors but for a long time never had any willing supporters.  Eventually we did get a mag/cal combo in a powdered form which I still have in the cupboard.  We stopped when we went onto an elimination diet of sorts and I never reinstated them.    We changed his eating around so at night he has bananas, egg and porridge as there is some natural melatonin in both bananas and oats and eggs are supposedly meant to help increase tryptophan levels and subsequently increase serotonin production.  Thank you for reminding me - I will check that out with the Vit D combo information and see what regime I can implement.  

     

    We used to do a lettuce juice tube feed at night (lettuce has natural opiates) and it worked occasionally but not enough to make it an ongoing regime - more pain than gain (until I get a really great grinding juicer. still saving up for that one).

     

    The other supplement I was going to find out about was 5-HTP which is apparently a tryptophan supplement to help with that serotonin production I have seen some of the information around ADHD talk about that - don't even know if it is available in Australia as it has only come to my attention as a possible thing to investige in the last fortnight.

     

    Apparently (courtesy of some kinesiology testing by a GP in Sydney who I didn't' return to as she charges by the minute!!!) he doesn't have any food allergies or intolerances but supposedly does have sensitivities to chlorine and formaldehyde.  Chlorine isn't a problem except for summer when we go swimming as we aren't on town water.  Formaldehyde on the other hand could be a contributor as in my wisdom of better insulation in his bedroom I laid a plywood floor over the existing flooring and have a number of cupboards in his room that are Ikea varieties, both the ply and laminated cupboards would be giving off formaldehyde gasses.  

     

    We are considering moving him to a different room to see if that makes any difference - just need to decide whether I need to lift up the foam tiled rubber flooring for the same reason.  I have one friend who knows a lot more than me about plants also researching to see if there is benefit in certain varieties of indoor plants that are suitable for bedrooms that would absorb any of those chemical gasses - ha ha. as I indicated we are really getting to the pointy end of options.  Sometimes I just laugh at the options we are at they sometimes seem so totally 'out there'.

     

    Surgery might be an option down the track in a few years if we are still having issues.  We have looked at surgery options in the past but our problem to date is until he gets mouth breathing as a consistent we can't risk taking adenoids as currently they act as a shelf stopping any food getting stuck up his nose - was more of a problem when he was a projectile vom-monster than now, but there is still that issue if he gets anything blocking it he could get into real trouble.  We are reluctant to remove tonsils as they are not oversize, doesn't get any infections in them and currently they assist in providing some additional structure to the otherwise compromised physical strength of his neck.  I am fairly confident in the physical therapy we do that we will eventually get these changes to all this nasal/neck/jaw area (if I just push it along a bit more)

     

    Mac doesn't have epilepsy so not sure if there are other options to consider.  The brain injury was diffuse damage to every part so the lack of epilepsy is quite surprising, but boy, do I love being out of the grips of the neurologists!

     

    One other therapy we will consider finding out more about is the light therapy.  As I understand it you have a light with certain lumens or something that is on for set times during the day with the goal being to again stop the release of melatonin during the day - I am not sure if this would even be doable, particularly with school, so it is way down the list of options at this stage.

     

    Seemingly the benefits of sleep deprivation mean you get to research sleep deprivation quite significantly.  Mac used be such a toad that Shawn would shift to a different room, I'd put the light and tv on and prop Mac up in the corner of the bed so he could happy watch inappropriate TV shows 'glaarring' with pleasure at getting his own way yet again, and I would go and get the computer, do my work/payroll etc at 3am sitting next to Mac in bed and then poke around on the internet for any information I could find until the nocturnal child decided it was daytime and therefore an appropriate time to go to sleep - ugh.

     

    Mac is unwell at the moment with a really bad cold (might even be Boy Flu they way he has been groaning and moaning with it).  Funnily, whenever we ask him if he is getting better he feigns a 'bad cough' with a sly grin or evil glint in his eye.  Hmmm, he can have one more day off school then it's back to the grindstone for him.  

     

    Cheers

    Gina


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Tuesday, 2 June 2009 6:38 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Wow...you guys have been through a lot and worked out a heap of strategies. This kind of challenge for me is what parents miss out getting support with...most people just have no idea about the complexity of what we deal with. I hope you know how awesome you are.

     

    My experience is with Angelman...where again it seems to be a magical combination of strategies which work. There are two I can offer which you haven't listed:

     

    1.      Calcium/magnesium/vitamin d supplements. This was the magic formula for Eli to start sleeping through the night. Cal/mag do a number of things from being a mild anti-epileptic /calming factor for our nervous system, to helping tight muscles relax their tone. Given that this is a challenge for Mac it could be worth a try. See your GP for recommended doses for a little kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of Vit D. These three nutrients work together and you can't absorb/make one work without the other. I'm no longer especially into 'natural' therapies...there is quite a bit of mainstream research confirming the significance of these three nutrients...and the common nature of deficiencies in them. Eli's endocrinologist said he'd like all teenagers to be on this combination, they are so important and so much bone is laid down in teen years. The data shows that where even young people have intellectual disabilities, the rates of osteoporosis are much higher, so good general practice for our kids. Having a teenager with severe osteo I can tell you it isn't a fun outsome.

    Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to sleeping 8-12 hours a night after just a few days on this combination. It doesn't help all kids, but is worth a try.

    2.      The breathing issue is one which is common in angelman too...and surgery gets the best results. This may sound extreme, but I have seen so many kids do so much better...in terms of sleep, health and cognitive function after having adenoids and/or tonsils removed. I think it is early days for Mac to be considering this, but something you might want to think about at some stage. Again...I am very anti surgery...but so many families have had such a huge improvement in quality of life where there is a significant problem. If I could have my time over, I'd have this looked at for Eli. If you wanted to email with other parents who had this surgery done on their young children I could put you in touch.

    3.      Does Mac have epilepsy? There are some other/different strategies if this is the case, perhaps.

     

    I'd love to know if any of the above could help. I think you are awesome even being up for this discussion when you are long term sleep deprived.

     

    Jaquie 

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 1 June 2009 7:20 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Jaquie

     

    Yes please, I am always keen to hear anything on sleep.

     

    I have one other non-medication combo I think I can try that I know of, but maybe haven't exhausted all avenues after all.  Still have some music options to try, then some bed/mattress options - although beds/mattresses are the expensive things to have 'not work' so they are my last resort.

     

    There are a few reasons we think Mac doesn't sleep including any of the following:

    -    cortical vision blindness meaning he may not be getting enough daylight brain messaging to inhibit the release of melatonin during the day then there isn't a good enough supply to get him through the night

    -    same deal with the production of serotonin ie not enough to keep him asleep through the night.

    -    he is a nose breather so any nasal congestion causes him to get very stressed because he can't physically breath through his mouth without significant difficultly - we used to wonder why he coughed all night in the winter months till we worked out that was the only way he could actually breathe he had to rely on the coughing propulsion of air to allow the flow in and out since he couldn't mouth breathe (gave back our parents of the year award for that one ha ha).  As we continue to get gains in his physical structure around his nose, jaw etc I expect this to improve to allow him to return to both nose/mouth breathing like we do - just doesn't help him in the interim period.

    -    he is so incredibly tight in his muscles he turns into a pretzel and is totally uncomfortable after a sleep stint of three-four hours no matter what position you put him in.

    -    he is naughty - he cries for attention and is totally devastated until you touch or speak to him, then he grins the biggest naughtiest grin - ugh  It has improved however, he used to poke his tongue out and make himself gag and then projectile vomit for attention until we managed to remove the projectile vomiting out of his 'list of talents'.

    -    he used to get very stressed by the dark and quiet.  He used to only cope if the lights were on and the tv on - we have managed to wean him out of that by using the melatonin supplements and some white noise - now he copes pretty well regardless.

    -    He hits his peak interactive period around 8pm onwards and being selfish parents we hate missing that part of his life, we love hearing the new sounds, enjoying the increased level of alertness and awareness and interaction so we probably have let him stay up too late for too many years (although there is research to show stroke patients do their best learning in the evening hours as their bodies take longer to get certain hormones etc out of their system through the day so there may be something in that aspect considering Mac's bran injury probably has some similar components) - but mostly I think it is us wanting to enjoy him in that moment.

    -    On the nights we have used valergan he has slept all night and some nights only being rolled in the early hours of the morning but not being any more uncomfortable when he wakes up, so not sure what that tells us.  We wondered whether a memory foam mattress or a water bed could be beneficial for him.

     

    As you can see we haven't done very well narrowing the list of potential contributors down so feel free to share away.  While the sleep deprivation is debilitating for us and him, the difference in him when he has had the full night sleep albeit 'valergan' enhanced to combat his recent hayfever and sinus infections he is noticeably improved in his alertness, awareness and interactivity - he needs us to keep on trying to find answers to the sleep issue for him.

     

    Cheers

    Gina

    Gina Wilson-Burns
    110a FLANNERY LANE, TAPITALLEE  NSW  2540
    TELEPHONE : 0412 022014  or  02 44460037
    EMAIL: sandgburns at bigpond.com

     


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    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 1 June 2009 7:03 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: FV: Hi Gina..re Mac and sleep

     

    Hi Gina, and folks

     

    I am at a conference and trying to catch up on my emails during the boring bits..so far got rid of more than 1000 of them and feeling smug!

     

    Gina, I only just finished reading your post below, and wondered if you wanted to talk about sleep. Do you know why Mac doesn't sleep? We went through the whole sleep disorder thing with Eli...angelman is notoriously difficult in terms of sleep and I might know some stuff you haven't tried/heard about...let me know if you are interested in discussing. I reckon sleep deprivation is one of the most difficult things us parents have to deal with.

     

    Jaquie J

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 9:37 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    Thanks Catherine & Meg

     

    Catherine, That is great information. thank you.  I do want all of that for every person (of course with the added benefit of it being fully accessible with built in discreet ceiling tracking, automatic wider doors & taps, Japanese style bidet toilets, fully accessible bathrooms with turning circles and lifts - so that an otherwise unlikely candidate for independence has the best shot at independence).  Mental note to self. must change Australian Building Standards when time permits.

     

    And I can see how Young Care is different to that model  but still don't know what to wish for when it comes to those too young to be in aged care facilities and who have nowhere else to go, or for those imprisoned in their homes because, through no fault of their own, true access to their community has been hard to achieve and I guess my na?ve belief in all this is that by Young Care providing a middle ground for these people they can then redevelop relationships, create friendships and then possibly choose to move on from that model.    It is a very happy shiny place in my world - I can often assume things will simply exist when they don't.

     

    BUT you might be pleased to know we have just taken a very big step for us, and only agreed to because I have taken what you have all said very seriously.

     

    We have to attend a birthday party in Wagga this weekend and while we wanted to attend the party without Mac we still wanted him over in Wagga for the rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going to look after him on Saturday night.  This is huge from our perspective - we don't ask friends to babysit- mostly because Mac simply just doesn't sleep but also because he just isn't a disruptive child - he is only hard work over night so he is easy to take out and about with us.  I feel a bit of a fake as he has been a little unwell and we have had to revert to some medication for him for the first time in 5 years and the slightly pleasant side effect is that it does make him sleep a little better - at least enough that I don't feel like these friends will be expected to pull an 'all-nighter' having to sit up with him the entire night.

     

    So thank you all for giving me the courage to do this - even if it is with performance enhancing drugs and the likely significant financial cost to us in red wine when we stay with them for the next night.  I will remember to chant. "I have no guilt, this is normal & natural" whenever I feel myself slipping into that 'guilt trap'.

     

    Meg, thanks for your flippant throw away line about the 'carers report'.  I haven't even begun to read it - still rumbling with school stuff.  But thanks for the impetus for great conversation/comments.  

     

    Cheers All

     

    Gina

     


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 6:19 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    Hi there, 

    Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. 

     

    This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called 'innovative options' like 'villages', and 'cluster houses'. This is the difference between what you have identified Gina ie the luxury over 50's developments and what people with disability will get....

     

    Response to contemporary standards claim (2)

    Characteristics of village style accommodation for people without disabilities 

    ?   Used by a wide variety of people of all ages, gender, ethnicity and capacity

    ?   Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out)

    ?   They live there by choice

    ?   They can come and go as they choose

    ?   They have control over their lifestyle (what to wear, what to eat, when to go to bed etc)

    ?   They can make unquestioned risky decisions

    ?   They have control over their financial arrangements/budget

    ?   They can choose who they want to live with and be friends with

    ?   They can choose their recreational activities

    ?   They choose where, when and how they work

    ?   They can move out when they choose.

     

    (This slide is courtesy of Anne Elysee)

     

     

    Catherine

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 5:49 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    Thanks Libby

    I am happy to read anything anyone has to say.  As I said in my post this is an area I get very confused about and am trying to understand more about it.  Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues).  And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say.  

     

    I also know I don't have a really good grasp of the variety of living arrangement people choose.  For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity.  I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families.  My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future.

     

    Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say.

     

    Cheers

    Gina


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, 4 May 2009 4:30 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

     

    It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again.

     

    Anywho

     

    It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like

     

     - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved

     - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". 

     - wanting to connect to other families interested in governing and running their own supports.

     - working on valued roles in general

     - teaching others. Speaking at conferences and lectures and assisting others to learn.

     

    and so on

     

    I think what I'm saying is that

     - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on.

     - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches.

     

    All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. 

     

    Libby 

     


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From familyvoices at inpress.pledgonline.com  Fri Jun  5 17:15:37 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 6 Jun 2009 08:15:37 +0800
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <F17F59AC7A274931BE041A9A0CE2A596@D8XYGK1S>
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91><66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>	<005e01c9e5e6$7bd64ad0$7382e070$@net.au>
	<F17F59AC7A274931BE041A9A0CE2A596@D8XYGK1S>
Message-ID: <000901c9e63b$eba3cf90$c2eb6eb0$@net.au>

That surgery is so extra-ordinary...I first heard of it maybe a year ago
when it was on an episode of ?House?. Wow. That is a miracle. Epilepsy is
such a challenge. A dear friend of mine has a daughter who is 17 and has had
uncontrolled seizures since she was 6 and it is so miserable and complex to
support her.  She?s been told she can?t have that surgery...

 

As far as I can tell, the cal/mag/D combo seems to help everyone in one way
or another. It assists with so  many things...and the growing amount of
research in this area suggests that these minerals/hormone combination are
an issue especially with people with ID for some reason. In my anecdotal
experience, it helps some people with their sleep in a profound way and
others not...so no harm in trying. You can get all three in one tablet. The
ones we get are called ?calcium complete?. You need to make sure there is
twice as much calcium as magnesium. The tablets are big and chalky and hard
to swallow..we soak them in a bit of water and stir into eli?s yoghurt, but
you might be able to find a powder. Most adults need at least 1000mg
cal/500mg mag a day...take in two doses one in the morning and one in the
evening.

 

With eli, this is what took him from 90mins sleep a night to 8 -9 hours age
3. He became continent at the same time, exactly....cal/mag has a positive
effect on muscle tone and I wonder if this helped him in some way. I had
actually been taking it for years for pms and period pain...helps a lot with
that so for a woman the week before and during her menstrual period it is
awesome.

 

I stopped giving it to him when he started frisium at age 9 because he slept
without it, and I now regret that hugely because then at age 15 he was
diagnosed with severe osteoporosis. This was a mystery so (again, sigh) we
did the doctor?s job and started researching (we know that osteo can be
caused by epilepsy meds, but it was felt that this wasn?t the culprit). What
we discovered was that osteo is very common where there is ID....but
undiagnosed because people aren?t looking for it. Then we found a study out
of Italy which suggested it is a feature of Angelman. This was entirely
unknown in the Angelman community but I got online and bugged the
international folks who started getting their kids tested and all these
families discovered their kids...as young as 3....with severe osteoporosis.
Actually in Angelman the hormone Vitamin D seems to be the culprit but we
aren?t sure why. Its cool in the sense now many are taking cal/mag/d and
their bones, at least in the kids, are improving slowly.

 

Generally there is a growing belief that most of us lack vitamin D
especially as we stay out of the sun more/use sun block and avoid the few
dietary sources because they have a lot of fat...eg butter, eggs.

 

Chat with your doctor as for everything but I?d give it a go and see...both
for sleep and for pms if that?s relevant.

 

Jaquie J

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Saturday, 6 June 2009 6:24 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Hi Jaquie and Gina

Gina, sounds like your options are good with so much family support around
you. When all the respite people get the idea that flexible respite is the
real answer, we will all get somewhere.

Jaquie, Lauren has had two brain operations. Firstly the corpus callosum
resection she had 20 years ago this week! That divided her brain in half and
kept the seizures in one area. - Successful for a few
years............Then.........she got worse and worse and eventually she had
a partial hemispherectomy and had 2/3 of the right side of her brain
removed. That was 12 years ago this December. She hasn't had a seizure
since. Like a miracle really. She is not on any medication. So most of the
things that were relevant in her life pre surgery are not relevant now.
Apart from the fact that she has developed some terrible sleep habits. 

I think her main problem with the lack of sleep is, she seems to have
developed a habit of being awake. I can't imagine what else it is. She just
doesn't get very tired. Do you think the calcium/magnesium/Vit D combo would
assist her? Does the medication come as 1 tablet? I take Calcium Vit D as a
combo all in one tablet.. Maybe there is one with magnesium as well. Can you
tell me more about this? How does it help Eli?

Off to a family wedding this cool Melbourne morning.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Saturday, June 06, 2009 12:04 AM

Subject: Re: FV: Hi Gina..re Mac and sleep

 

Hey Maureen

 

Have you ever tried the calcium/magnesium/vitamin D combination with Lauren?
Our neuro explained that with some people/kids those night seizures keep
them awake..and that as a mild anti-epileptic this might have been the
reason for eli being so wakeful at night. I guess those myoclonic seizures
most of us have at one time or another falling asleep makes that seem
possible.

 

I guess having had so many conversations with people about the sleep issue I
am a bit cynical about the ?they just don?t need much sleep? theory. This
was the conclusion from the docs with eli but once he started sleeping
?normally? he developed so much faster.

 

The other thing I notice is that often older kids with epilepsy who are on
medication which worked ten years ago aren?t being offered some of the newer
meds...its quite expensive but when eli started taking frisium plus topamax,
his sleep pattern improved again, going from 8 hours consistently to 12
hours plus, and his alertness was amazing. The results of that in terms of
his cognitive ability have been brilliant. The thing is, people with
epilepsy generally need more sleep, not less.

 

I think with our kids the medical folks seem try one or two things and then
stick us in the too hard basket....it has been from other parents that I?ve
learned most of the medical knowledge I needed to make eli?s life as good as
it could be.

 

Sweet dreams folks...I wish a happy sleep to everyone tonight.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 8:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

HI Jane/Gina

Yes Mac does sound like a star and so do you both!

I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.

Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.

It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.

However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.

At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.

Good luck ladies. I think you are doing an amazing job.

Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)

 

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 05, 2009 9:39 AM

Subject: Re: FV: Hi Gina..re Mac and sleep

 

Hi Gina

 

Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  

 

Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?

 

I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  

I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha

 

I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.

 

Hang in there I too think you are doing an amazing job and Mac sounds like a
star.

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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  

 

We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  

 

We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).

 

The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.

 

Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  

 

We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.

 

Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)

 

Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!

 

One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.

 

Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.

 

Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.

 

My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:

 

1.      Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.

Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.

2.      The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.

3.      Does Mac have epilepsy? There are some other/different strategies if
this is the case, perhaps.

 

I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.

 

Jaquie 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Yes please, I am always keen to hear anything on sleep.

 

I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.

 

There are a few reasons we think Mac doesn?t sleep including any of the
following:

-cortical vision blindness meaning he may not be getting enough daylight
brain messaging to inhibit the release of melatonin during the day then
there isn?t a good enough supply to get him through the night

-same deal with the production of serotonin ie not enough to keep him asleep
through the night.

-he is a nose breather so any nasal congestion causes him to get very
stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.

-he is so incredibly tight in his muscles he turns into a pretzel and is
totally uncomfortable after a sleep stint of three-four hours no matter what
position you put him in.

-he is naughty ? he cries for attention and is totally devastated until you
touch or speak to him, then he grins the biggest naughtiest grin ? ugh  It
has improved however, he used to poke his tongue out and make himself gag
and then projectile vomit for attention until we managed to remove the
projectile vomiting out of his ?list of talents?.

-he used to get very stressed by the dark and quiet.  He used to only cope
if the lights were on and the tv on ? we have managed to wean him out of
that by using the melatonin supplements and some white noise ? now he copes
pretty well regardless.

-He hits his peak interactive period around 8pm onwards and being selfish
parents we hate missing that part of his life, we love hearing the new
sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.

-On the nights we have used valergan he has slept all night and some nights
only being rolled in the early hours of the morning but not being any more
uncomfortable when he wakes up, so not sure what that tells us.  We wondered
whether a memory foam mattress or a water bed could be beneficial for him.

 

As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.

 

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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

?       Used by a wide variety of people of all ages, gender, ethnicity and
capacity

?       Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)

?       They live there by choice

?       They can come and go as they choose

?       They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)

?       They can make unquestioned risky decisions

?       They have control over their financial arrangements/budget

?       They can choose who they want to live with and be friends with

?       They can choose their recreational activities

?       They choose where, when and how they work

?       They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 


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From familyvoices at inpress.pledgonline.com  Fri Jun  5 18:55:37 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 6 Jun 2009 09:55:37 +0800
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <7tb87v$b18smb@ipmail01.adl6.internode.on.net>
References: <66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>
	<7tb87v$b18smb@ipmail01.adl6.internode.on.net>
Message-ID: <000c01c9e649$e35e77f0$aa1b67d0$@net.au>

Gina, this is a genius idea re the sleep respite. People who don?t get sleep
due to their kids not sleeping..for years and sometimes more years...should
be a priority. You just can?t do any of this other stuff when just getting
through the day is enough of a struggle. Someone should invent that service.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 4:32 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Maureen, it is really hard to remember life BC (before children) for most
people (and we are only six years in with Mac), but when there is a child
with additional needs in the mix then I think it is even more marked.  Shawn
and I often remark about how much time we must have wasted in our previous
life ? not to mention how much we would have missed out on learning
 

 

Sleep (or lack there of) is an issue that doesn?t get as much ?recognition?
as it should.  I know in the carer review they had a while back my comment
on respite was that if it is to be available it has to meet the needs of
those seeking it.  The only type of respite we would have been interested in
to date would have been the ability to drop Mac off to a ?slumber party?
type respite (which don?t exist) where we would drop him off after dinner,
pick him up before breakfast and not care whether he slept or not as long as
WE had the luxury of some uninterrupted sleep every now and then.  We would
have been happy to pay for this as a babysitting service (maybe subsidized)
but figured others could pay for the convenience of a place like this eg
shift workers, families without large networks, families wanting to go out
together eg many weddings etc are no kids events these days, it would be
nice to have an option occasionally where you can all go out as adults
without kids and not tap into your extended family networks.

 

In my further thinking around this I guess I have changed a little in that I
think with the right supports from early on we could have had more people
willing to put their hands up as babysitters and this might not be a
necessary requirement and/or desire
 then again, sometimes it is nice just
to have the ability to pay for a service ? no strings attached.

 

We used to joke if only we could find a babysitters club made up of those
with insomnia ? I think that falls under the banner of taking advantage

*sigh*

 

Mac seems to be on the mend from his head cold ? he managed to score the
whole week of school courtesy of a nose that just wouldn?t stop running ?
doesn?t seem human that anyone that size could create so much crud.  

 

Cheers

Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 10:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

HI Jane/Gina

Yes Mac does sound like a star and so do you both!

I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.

Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.

It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.

However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.

At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.

Good luck ladies. I think you are doing an amazing job.

Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)

 

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 05, 2009 9:39 AM

Subject: Re: FV: Hi Gina..re Mac and sleep

 

Hi Gina

 

Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  

 

Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?

 

I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  

I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha

 

I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.

 

Hang in there I too think you are doing an amazing job and Mac sounds like a
star.

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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  

 

We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  

 

We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).

 

The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.

 

Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  

 

We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.

 

Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)

 

Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!

 

One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.

 

Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.

 

Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.

 

My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:

 

1.      Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.

Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.

2.      The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.

3.      Does Mac have epilepsy? There are some other/different strategies if
this is the case, perhaps.

 

I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.

 

Jaquie 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Yes please, I am always keen to hear anything on sleep.

 

I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.

 

There are a few reasons we think Mac doesn?t sleep including any of the
following:

-    cortical vision blindness meaning he may not be getting enough daylight
brain messaging to inhibit the release of melatonin during the day then
there isn?t a good enough supply to get him through the night

-    same deal with the production of serotonin ie not enough to keep him
asleep through the night.

-    he is a nose breather so any nasal congestion causes him to get very
stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.

-    he is so incredibly tight in his muscles he turns into a pretzel and is
totally uncomfortable after a sleep stint of three-four hours no matter what
position you put him in.

-    he is naughty ? he cries for attention and is totally devastated until
you touch or speak to him, then he grins the biggest naughtiest grin ? ugh
It has improved however, he used to poke his tongue out and make himself gag
and then projectile vomit for attention until we managed to remove the
projectile vomiting out of his ?list of talents?.

-    he used to get very stressed by the dark and quiet.  He used to only
cope if the lights were on and the tv on ? we have managed to wean him out
of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.

-    He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.

-    On the nights we have used valergan he has slept all night and some
nights only being rolled in the early hours of the morning but not being any
more uncomfortable when he wakes up, so not sure what that tells us.  We
wondered whether a memory foam mattress or a water bed could be beneficial
for him.

 

As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.

 

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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

?   Used by a wide variety of people of all ages, gender, ethnicity and
capacity

?   Residents have ownership or tenancy rights (They cannot be arbitrarily
relocated from one unit to another or be thrown out)

?   They live there by choice

?   They can come and go as they choose

?   They have control over their lifestyle (what to wear, what to eat, when
to go to bed etc)

?   They can make unquestioned risky decisions

?   They have control over their financial arrangements/budget

?   They can choose who they want to live with and be friends with

?   They can choose their recreational activities

?   They choose where, when and how they work

?   They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 


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From familyvoices at inpress.pledgonline.com  Fri Jun  5 23:34:04 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 6 Jun 2009 16:34:04 +1000
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <000c01c9e649$e35e77f0$aa1b67d0$@net.au>
Message-ID: <7tb87v$b1rhuc@ipmail01.adl6.internode.on.net>

Jaquie
Amazing isn?t it that this type of thing just doesn?t exist.  
 
I?ll just keep putting it in every submission/survey/questionnaire I do ?
maybe someone somewhere will establish it.
 
I haven?t got the time or inclination just yet
 who knows in the future.
 
Gina
 
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Saturday, 6 June 2009 11:56 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Gina, this is a genius idea re the sleep respite. People who don?t get sleep
due to their kids not sleeping..for years and sometimes more years...should
be a priority. You just can?t do any of this other stuff when just getting
through the day is enough of a struggle. Someone should invent that service.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 4:32 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Maureen, it is really hard to remember life BC (before children) for most
people (and we are only six years in with Mac), but when there is a child
with additional needs in the mix then I think it is even more marked.  Shawn
and I often remark about how much time we must have wasted in our previous
life ? not to mention how much we would have missed out on learning
 
 
Sleep (or lack there of) is an issue that doesn?t get as much ?recognition?
as it should.  I know in the carer review they had a while back my comment
on respite was that if it is to be available it has to meet the needs of
those seeking it.  The only type of respite we would have been interested in
to date would have been the ability to drop Mac off to a ?slumber party?
type respite (which don?t exist) where we would drop him off after dinner,
pick him up before breakfast and not care whether he slept or not as long as
WE had the luxury of some uninterrupted sleep every now and then.  We would
have been happy to pay for this as a babysitting service (maybe subsidized)
but figured others could pay for the convenience of a place like this eg
shift workers, families without large networks, families wanting to go out
together eg many weddings etc are no kids events these days, it would be
nice to have an option occasionally where you can all go out as adults
without kids and not tap into your extended family networks.
 
In my further thinking around this I guess I have changed a little in that I
think with the right supports from early on we could have had more people
willing to put their hands up as babysitters and this might not be a
necessary requirement and/or desire
 then again, sometimes it is nice just
to have the ability to pay for a service ? no strings attached.
 
We used to joke if only we could find a babysitters club made up of those
with insomnia ? I think that falls under the banner of taking advantage

*sigh*
 
Mac seems to be on the mend from his head cold ? he managed to score the
whole week of school courtesy of a nose that just wouldn?t stop running ?
doesn?t seem human that anyone that size could create so much crud.  
 
Cheers
Gina
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 10:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
HI Jane/Gina
Yes Mac does sound like a star and so do you both!
I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.
Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.
It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.
However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.
At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.
Good luck ladies. I think you are doing an amazing job.
Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)
 
Maureen
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Friday, June 05, 2009 9:39 AM
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Hi Gina
 
Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  
 
Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?
 
I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  
I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha
 
I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.
 
Hang in there I too think you are doing an amazing job and Mac sounds like a
star.
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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  
 
We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  
 
We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).
 
The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.
 
Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  
 
We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.
 
Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)
 
Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!
 
One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.
 
Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.
 
Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.
 
My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:
 
1. Calcium/magnesium/vitamin d supplements. This was the magic formula for
Eli to start sleeping through the night. Cal/mag do a number of things from
being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.
Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.
2. The breathing issue is one which is common in angelman too...and surgery
gets the best results. This may sound extreme, but I have seen so many kids
do so much better...in terms of sleep, health and cognitive function after
having adenoids and/or tonsils removed. I think it is early days for Mac to
be considering this, but something you might want to think about at some
stage. Again...I am very anti surgery...but so many families have had such a
huge improvement in quality of life where there is a significant problem. If
I could have my time over, I?d have this looked at for Eli. If you wanted to
email with other parents who had this surgery done on their young children I
could put you in touch.
3. Does Mac have epilepsy? There are some other/different strategies if this
is the case, perhaps.
 
I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.
 
Jaquie 
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Yes please, I am always keen to hear anything on sleep.
 
I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.
 
There are a few reasons we think Mac doesn?t sleep including any of the
following:
-    cortical vision blindness meaning he may not be getting enough daylight
brain messaging to inhibit the release of melatonin during the day then
there isn?t a good enough supply to get him through the night
-    same deal with the production of serotonin ie not enough to keep him
asleep through the night.
-    he is a nose breather so any nasal congestion causes him to get very
stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.
-    he is so incredibly tight in his muscles he turns into a pretzel and is
totally uncomfortable after a sleep stint of three-four hours no matter what
position you put him in.
-    he is naughty ? he cries for attention and is totally devastated until
you touch or speak to him, then he grins the biggest naughtiest grin ? ugh
It has improved however, he used to poke his tongue out and make himself gag
and then projectile vomit for attention until we managed to remove the
projectile vomiting out of his ?list of talents?.
-    he used to get very stressed by the dark and quiet.  He used to only
cope if the lights were on and the tv on ? we have managed to wean him out
of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.
-    He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.
-    On the nights we have used valergan he has slept all night and some
nights only being rolled in the early hours of the morning but not being any
more uncomfortable when he wakes up, so not sure what that tells us.  We
wondered whether a memory foam mattress or a water bed could be beneficial
for him.
 
As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.
 
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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep
 
Hi Gina, and folks
 
I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!
 
Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Catherine & Meg
 
Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits

 
And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.
 
BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.
 
We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.
 
So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.
 
Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  
 
Cheers All
 
Gina
 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Hi there, 
Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 
 
This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....
 
Response to contemporary standards claim (2)
Characteristics of village style accommodation for people without
disabilities 
*   Used by a wide variety of people of all ages, gender, ethnicity and
capacity
*   Residents have ownership or tenancy rights (They cannot be arbitrarily
relocated from one unit to another or be thrown out)
*   They live there by choice
*   They can come and go as they choose
*   They have control over their lifestyle (what to wear, what to eat, when
to go to bed etc)
*   They can make unquestioned risky decisions
*   They have control over their financial arrangements/budget
*   They can choose who they want to live with and be friends with
*   They can choose their recreational activities
*   They choose where, when and how they work
*   They can move out when they choose.
 
(This slide is courtesy of Anne Elysee)
 
 
Catherine
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Libby
I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  
 
I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.
 
Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.
 
Anywho
 
It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like
 
 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved
 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 
 - wanting to connect to other families interested in governing and running
their own supports.
 - working on valued roles in general
 - teaching others. Speaking at conferences and lectures and assisting
others to learn.
 
and so on
 
I think what I'm saying is that
 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.
 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.
 
All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 
 
Libby 
 

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From familyvoices at inpress.pledgonline.com  Sun Jun  7 03:50:58 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sun, 7 Jun 2009 20:50:58 +1000
Subject: FV: Hi Gina..re Mac and sleep
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91><66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>	<005e01c9e5e6$7bd64ad0$7382e070$@net.au><F17F59AC7A274931BE041A9A0CE2A596@D8XYGK1S>
	<000901c9e63b$eba3cf90$c2eb6eb0$@net.au>
Message-ID: <3056D92082F342DCBE69B4B308801E98@D8XYGK1S>

Jaquie
I have had a hectic few days and the first time to get to the computer. I just wanted to tell you something about Lauren's surgery.
She was the first in Australia to have the Hemispherectomy 12 years ago. Since then they seem to do them often. They were being performed in Canada very successfully and the surgeons went from Melbourne to Canada to learn the technique and when I was gathering all the information I could, it was all Canadian. At the AACl conference I was sitting next to a woman who's son had had the very same operation Lauren has had..but, it wasn't as successful as Lauren. So, it just isn't for everyone.
Recently while in Hobart, I ran into the neurologist who was seeing Lauren post surgery. He told me he goes to Hobart fortnightly to see patients who they operate on in Melbourne at the Children's hospital. He told me they are now doing about 40 operations for epilepsy a year. All different types of surgery, but they are having some success that is really worth all the effort.
Epilepsy, when uncontrolled is a real bugger of a thing. It was like living on the edge of a volcano for our family. New things are happening all the time and we were very lucky to have it work for Lauren. But we have no idea if it will ever return, we just hope not. She does suffer incredible head aches that go on for days some times, but even that is better than 80 fits a day.
Cheers
Maureen

.


  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Saturday, June 06, 2009 10:15 AM
  Subject: Re: FV: Hi Gina..re Mac and sleep


  That surgery is so extra-ordinary...I first heard of it maybe a year ago when it was on an episode of 'House'. Wow. That is a miracle. Epilepsy is such a challenge. A dear friend of mine has a daughter who is 17 and has had uncontrolled seizures since she was 6 and it is so miserable and complex to support her.  She's been told she can't have that surgery...

   

  As far as I can tell, the cal/mag/D combo seems to help everyone in one way or another. It assists with so  many things...and the growing amount of research in this area suggests that these minerals/hormone combination are an issue especially with people with ID for some reason. In my anecdotal experience, it helps some people with their sleep in a profound way and others not...so no harm in trying. You can get all three in one tablet. The ones we get are called 'calcium complete'. You need to make sure there is twice as much calcium as magnesium. The tablets are big and chalky and hard to swallow..we soak them in a bit of water and stir into eli's yoghurt, but you might be able to find a powder. Most adults need at least 1000mg cal/500mg mag a day...take in two doses one in the morning and one in the evening.

   

  With eli, this is what took him from 90mins sleep a night to 8 -9 hours age 3. He became continent at the same time, exactly....cal/mag has a positive effect on muscle tone and I wonder if this helped him in some way. I had actually been taking it for years for pms and period pain...helps a lot with that so for a woman the week before and during her menstrual period it is awesome.

   

  I stopped giving it to him when he started frisium at age 9 because he slept without it, and I now regret that hugely because then at age 15 he was diagnosed with severe osteoporosis. This was a mystery so (again, sigh) we did the doctor's job and started researching (we know that osteo can be caused by epilepsy meds, but it was felt that this wasn't the culprit). What we discovered was that osteo is very common where there is ID....but undiagnosed because people aren't looking for it. Then we found a study out of Italy which suggested it is a feature of Angelman. This was entirely unknown in the Angelman community but I got online and bugged the international folks who started getting their kids tested and all these families discovered their kids...as young as 3....with severe osteoporosis. Actually in Angelman the hormone Vitamin D seems to be the culprit but we aren't sure why. Its cool in the sense now many are taking cal/mag/d and their bones, at least in the kids, are improving slowly.

   

  Generally there is a growing belief that most of us lack vitamin D especially as we stay out of the sun more/use sun block and avoid the few dietary sources because they have a lot of fat...eg butter, eggs.

   

  Chat with your doctor as for everything but I'd give it a go and see...both for sleep and for pms if that's relevant.

   

  Jaquie J

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Saturday, 6 June 2009 6:24 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi Gina..re Mac and sleep

   

  Hi Jaquie and Gina

  Gina, sounds like your options are good with so much family support around you. When all the respite people get the idea that flexible respite is the real answer, we will all get somewhere.

  Jaquie, Lauren has had two brain operations. Firstly the corpus callosum resection she had 20 years ago this week! That divided her brain in half and kept the seizures in one area. - Successful for a few years............Then.........she got worse and worse and eventually she had a partial hemispherectomy and had 2/3 of the right side of her brain removed. That was 12 years ago this December. She hasn't had a seizure since. Like a miracle really. She is not on any medication. So most of the things that were relevant in her life pre surgery are not relevant now. Apart from the fact that she has developed some terrible sleep habits. 

  I think her main problem with the lack of sleep is, she seems to have developed a habit of being awake. I can't imagine what else it is. She just doesn't get very tired. Do you think the calcium/magnesium/Vit D combo would assist her? Does the medication come as 1 tablet? I take Calcium Vit D as a combo all in one tablet.. Maybe there is one with magnesium as well. Can you tell me more about this? How does it help Eli?

  Off to a family wedding this cool Melbourne morning.

  Maureen

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Saturday, June 06, 2009 12:04 AM

    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Hey Maureen

     

    Have you ever tried the calcium/magnesium/vitamin D combination with Lauren? Our neuro explained that with some people/kids those night seizures keep them awake..and that as a mild anti-epileptic this might have been the reason for eli being so wakeful at night. I guess those myoclonic seizures most of us have at one time or another falling asleep makes that seem possible.

     

    I guess having had so many conversations with people about the sleep issue I am a bit cynical about the 'they just don't need much sleep' theory. This was the conclusion from the docs with eli but once he started sleeping 'normally' he developed so much faster.

     

    The other thing I notice is that often older kids with epilepsy who are on medication which worked ten years ago aren't being offered some of the newer meds...its quite expensive but when eli started taking frisium plus topamax, his sleep pattern improved again, going from 8 hours consistently to 12 hours plus, and his alertness was amazing. The results of that in terms of his cognitive ability have been brilliant. The thing is, people with epilepsy generally need more sleep, not less.

     

    I think with our kids the medical folks seem try one or two things and then stick us in the too hard basket....it has been from other parents that I've learned most of the medical knowledge I needed to make eli's life as good as it could be.

     

    Sweet dreams folks...I wish a happy sleep to everyone tonight.

     

    Jaquie J

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Friday, 5 June 2009 8:17 AM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    HI Jane/Gina

    Yes Mac does sound like a star and so do you both!

    I just wish I had all this support and information when Lauren was little. She will be 25 on Sunday.

    Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch pushed her in the pram around the suburbs so the other children (and me) in the house could rest and get some sleep.

    It went on for years not just as a bub. She would fit all night in her sleep and I used to sit beside her so she wouldn't choke/suffocate or die. Absolutely horrible time for us.

    However, now that is not the case, what we have is a night owl. She never goes to bed before 3.30am! No matter what we do or say, she is use to staying awake long hours. She doesn't need or have allot of sleep. She has created her own monster. She realises it is anti-social and not normal to be up all night every night. But that's how it goes. She is difficult to travel with but at 25 we have to realise she has to live her own life. This all started back as a bub when she was "afraid" to go to sleep.

    At the time when she was so ill, there really wasn't anyone who could assist us, with all the sleep issues and we were very stressed.

    Good luck ladies. I think you are doing an amazing job.

    Oh, I just want to say something else. With Lauren turning 25 on Sunday. well. I never thought she'd make it and I never thought I would either.  We have both made it. I feel she has been in my life for the 60 years I have been here. I can't remember life without her, she has had such a huge impact on me. I am sure she was joined to my hip way way way back! Amazing really....(am I alone here?)

     

    Maureen

      ----- Original Message ----- 

      From: Family Voices 

      To: familyvoices at inpress.pledgonline.com 

      Sent: Friday, June 05, 2009 9:39 AM

      Subject: Re: FV: Hi Gina..re Mac and sleep

       

      Hi Gina

       

      Do you know why Mac does not sleep?  Dumb question I know but my brain only works in small steps.  Probably from old age, sleepless nights and too many red wines.  

       

      Anyway, from what I have read quickly is, if you sat or sit up with Mac he is happy and then day light comes and he sleeps is that right.?

       

      I have a bit of experience too in this area, Sarah had Sleep apnea in a big way when she was littler I don't think they called it that then but the long and short was when she went into REM her airways would collapse she would not be able to breathe the brain would tell her to wake up it then the brain told her not to go to sleep.  

      I have a fantastic Respiratory Specialist who I used to call God in those days he worked in a catholic hospital so that was big he was also very pleasing on the eye so that made the sleepless nights bearable. Ha Ha

       

      I won't go into our journey unless you think is worthwhile but more than happy if you think it could be of help.  One thing we did journey down was tonsils out at 6 months bloody terrible but I trusted the persons so I used the gut instinct and it come thru along with a whole host of other stuff.

       

      Hang in there I too think you are doing an amazing job and Mac sounds like a star.

      Cheers Jane

       

      Jane Warner/Hudson

       

      07 46714737

       


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      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Tuesday, June 02, 2009 9:30 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi Gina..re Mac and sleep

       

      Jaquie

       

      Ahhh, thank you, thank you. I had forgotten about Cal/Mag sups but not sure I knew to combine with the Vit D so that is great info.  

       

      We tried on a number of occasions to get the info on them and the go ahead from Doctors but for a long time never had any willing supporters.  Eventually we did get a mag/cal combo in a powdered form which I still have in the cupboard.  We stopped when we went onto an elimination diet of sorts and I never reinstated them.    We changed his eating around so at night he has bananas, egg and porridge as there is some natural melatonin in both bananas and oats and eggs are supposedly meant to help increase tryptophan levels and subsequently increase serotonin production.  Thank you for reminding me - I will check that out with the Vit D combo information and see what regime I can implement.  

       

      We used to do a lettuce juice tube feed at night (lettuce has natural opiates) and it worked occasionally but not enough to make it an ongoing regime - more pain than gain (until I get a really great grinding juicer. still saving up for that one).

       

      The other supplement I was going to find out about was 5-HTP which is apparently a tryptophan supplement to help with that serotonin production I have seen some of the information around ADHD talk about that - don't even know if it is available in Australia as it has only come to my attention as a possible thing to investige in the last fortnight.

       

      Apparently (courtesy of some kinesiology testing by a GP in Sydney who I didn't' return to as she charges by the minute!!!) he doesn't have any food allergies or intolerances but supposedly does have sensitivities to chlorine and formaldehyde.  Chlorine isn't a problem except for summer when we go swimming as we aren't on town water.  Formaldehyde on the other hand could be a contributor as in my wisdom of better insulation in his bedroom I laid a plywood floor over the existing flooring and have a number of cupboards in his room that are Ikea varieties, both the ply and laminated cupboards would be giving off formaldehyde gasses.  

       

      We are considering moving him to a different room to see if that makes any difference - just need to decide whether I need to lift up the foam tiled rubber flooring for the same reason.  I have one friend who knows a lot more than me about plants also researching to see if there is benefit in certain varieties of indoor plants that are suitable for bedrooms that would absorb any of those chemical gasses - ha ha. as I indicated we are really getting to the pointy end of options.  Sometimes I just laugh at the options we are at they sometimes seem so totally 'out there'.

       

      Surgery might be an option down the track in a few years if we are still having issues.  We have looked at surgery options in the past but our problem to date is until he gets mouth breathing as a consistent we can't risk taking adenoids as currently they act as a shelf stopping any food getting stuck up his nose - was more of a problem when he was a projectile vom-monster than now, but there is still that issue if he gets anything blocking it he could get into real trouble.  We are reluctant to remove tonsils as they are not oversize, doesn't get any infections in them and currently they assist in providing some additional structure to the otherwise compromised physical strength of his neck.  I am fairly confident in the physical therapy we do that we will eventually get these changes to all this nasal/neck/jaw area (if I just push it along a bit more)

       

      Mac doesn't have epilepsy so not sure if there are other options to consider.  The brain injury was diffuse damage to every part so the lack of epilepsy is quite surprising, but boy, do I love being out of the grips of the neurologists!

       

      One other therapy we will consider finding out more about is the light therapy.  As I understand it you have a light with certain lumens or something that is on for set times during the day with the goal being to again stop the release of melatonin during the day - I am not sure if this would even be doable, particularly with school, so it is way down the list of options at this stage.

       

      Seemingly the benefits of sleep deprivation mean you get to research sleep deprivation quite significantly.  Mac used be such a toad that Shawn would shift to a different room, I'd put the light and tv on and prop Mac up in the corner of the bed so he could happy watch inappropriate TV shows 'glaarring' with pleasure at getting his own way yet again, and I would go and get the computer, do my work/payroll etc at 3am sitting next to Mac in bed and then poke around on the internet for any information I could find until the nocturnal child decided it was daytime and therefore an appropriate time to go to sleep - ugh.

       

      Mac is unwell at the moment with a really bad cold (might even be Boy Flu they way he has been groaning and moaning with it).  Funnily, whenever we ask him if he is getting better he feigns a 'bad cough' with a sly grin or evil glint in his eye.  Hmmm, he can have one more day off school then it's back to the grindstone for him.  

       

      Cheers

      Gina


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      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Tuesday, 2 June 2009 6:38 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi Gina..re Mac and sleep

       

      Wow...you guys have been through a lot and worked out a heap of strategies. This kind of challenge for me is what parents miss out getting support with...most people just have no idea about the complexity of what we deal with. I hope you know how awesome you are.

       

      My experience is with Angelman...where again it seems to be a magical combination of strategies which work. There are two I can offer which you haven't listed:

       

      1.      Calcium/magnesium/vitamin d supplements. This was the magic formula for Eli to start sleeping through the night. Cal/mag do a number of things from being a mild anti-epileptic /calming factor for our nervous system, to helping tight muscles relax their tone. Given that this is a challenge for Mac it could be worth a try. See your GP for recommended doses for a little kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of Vit D. These three nutrients work together and you can't absorb/make one work without the other. I'm no longer especially into 'natural' therapies...there is quite a bit of mainstream research confirming the significance of these three nutrients...and the common nature of deficiencies in them. Eli's endocrinologist said he'd like all teenagers to be on this combination, they are so important and so much bone is laid down in teen years. The data shows that where even young people have intellectual disabilities, the rates of osteoporosis are much higher, so good general practice for our kids. Having a teenager with severe osteo I can tell you it isn't a fun outsome.

      Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to sleeping 8-12 hours a night after just a few days on this combination. It doesn't help all kids, but is worth a try.

      2.      The breathing issue is one which is common in angelman too...and surgery gets the best results. This may sound extreme, but I have seen so many kids do so much better...in terms of sleep, health and cognitive function after having adenoids and/or tonsils removed. I think it is early days for Mac to be considering this, but something you might want to think about at some stage. Again...I am very anti surgery...but so many families have had such a huge improvement in quality of life where there is a significant problem. If I could have my time over, I'd have this looked at for Eli. If you wanted to email with other parents who had this surgery done on their young children I could put you in touch.

      3.      Does Mac have epilepsy? There are some other/different strategies if this is the case, perhaps.

       

      I'd love to know if any of the above could help. I think you are awesome even being up for this discussion when you are long term sleep deprived.

       

      Jaquie 

       

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Monday, 1 June 2009 7:20 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi Gina..re Mac and sleep

       

      Jaquie

       

      Yes please, I am always keen to hear anything on sleep.

       

      I have one other non-medication combo I think I can try that I know of, but maybe haven't exhausted all avenues after all.  Still have some music options to try, then some bed/mattress options - although beds/mattresses are the expensive things to have 'not work' so they are my last resort.

       

      There are a few reasons we think Mac doesn't sleep including any of the following:

      -cortical vision blindness meaning he may not be getting enough daylight brain messaging to inhibit the release of melatonin during the day then there isn't a good enough supply to get him through the night

      -same deal with the production of serotonin ie not enough to keep him asleep through the night.

      -he is a nose breather so any nasal congestion causes him to get very stressed because he can't physically breath through his mouth without significant difficultly - we used to wonder why he coughed all night in the winter months till we worked out that was the only way he could actually breathe he had to rely on the coughing propulsion of air to allow the flow in and out since he couldn't mouth breathe (gave back our parents of the year award for that one ha ha).  As we continue to get gains in his physical structure around his nose, jaw etc I expect this to improve to allow him to return to both nose/mouth breathing like we do - just doesn't help him in the interim period.

      -he is so incredibly tight in his muscles he turns into a pretzel and is totally uncomfortable after a sleep stint of three-four hours no matter what position you put him in.

      -he is naughty - he cries for attention and is totally devastated until you touch or speak to him, then he grins the biggest naughtiest grin - ugh  It has improved however, he used to poke his tongue out and make himself gag and then projectile vomit for attention until we managed to remove the projectile vomiting out of his 'list of talents'.

      -he used to get very stressed by the dark and quiet.  He used to only cope if the lights were on and the tv on - we have managed to wean him out of that by using the melatonin supplements and some white noise - now he copes pretty well regardless.

      -He hits his peak interactive period around 8pm onwards and being selfish parents we hate missing that part of his life, we love hearing the new sounds, enjoying the increased level of alertness and awareness and interaction so we probably have let him stay up too late for too many years (although there is research to show stroke patients do their best learning in the evening hours as their bodies take longer to get certain hormones etc out of their system through the day so there may be something in that aspect considering Mac's bran injury probably has some similar components) - but mostly I think it is us wanting to enjoy him in that moment.

      -On the nights we have used valergan he has slept all night and some nights only being rolled in the early hours of the morning but not being any more uncomfortable when he wakes up, so not sure what that tells us.  We wondered whether a memory foam mattress or a water bed could be beneficial for him.

       

      As you can see we haven't done very well narrowing the list of potential contributors down so feel free to share away.  While the sleep deprivation is debilitating for us and him, the difference in him when he has had the full night sleep albeit 'valergan' enhanced to combat his recent hayfever and sinus infections he is noticeably improved in his alertness, awareness and interactivity - he needs us to keep on trying to find answers to the sleep issue for him.

       

      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: Monday, 1 June 2009 7:03 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: FV: Hi Gina..re Mac and sleep

       

      Hi Gina, and folks

       

      I am at a conference and trying to catch up on my emails during the boring bits..so far got rid of more than 1000 of them and feeling smug!

       

      Gina, I only just finished reading your post below, and wondered if you wanted to talk about sleep. Do you know why Mac doesn't sleep? We went through the whole sleep disorder thing with Eli...angelman is notoriously difficult in terms of sleep and I might know some stuff you haven't tried/heard about...let me know if you are interested in discussing. I reckon sleep deprivation is one of the most difficult things us parents have to deal with.

       

      Jaquie J

       

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Monday, 4 May 2009 9:37 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

       

      Thanks Catherine & Meg

       

      Catherine, That is great information. thank you.  I do want all of that for every person (of course with the added benefit of it being fully accessible with built in discreet ceiling tracking, automatic wider doors & taps, Japanese style bidet toilets, fully accessible bathrooms with turning circles and lifts - so that an otherwise unlikely candidate for independence has the best shot at independence).  Mental note to self. must change Australian Building Standards when time permits.

       

      And I can see how Young Care is different to that model  but still don't know what to wish for when it comes to those too young to be in aged care facilities and who have nowhere else to go, or for those imprisoned in their homes because, through no fault of their own, true access to their community has been hard to achieve and I guess my na?ve belief in all this is that by Young Care providing a middle ground for these people they can then redevelop relationships, create friendships and then possibly choose to move on from that model.    It is a very happy shiny place in my world - I can often assume things will simply exist when they don't.

       

      BUT you might be pleased to know we have just taken a very big step for us, and only agreed to because I have taken what you have all said very seriously.

       

      We have to attend a birthday party in Wagga this weekend and while we wanted to attend the party without Mac we still wanted him over in Wagga for the rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going to look after him on Saturday night.  This is huge from our perspective - we don't ask friends to babysit- mostly because Mac simply just doesn't sleep but also because he just isn't a disruptive child - he is only hard work over night so he is easy to take out and about with us.  I feel a bit of a fake as he has been a little unwell and we have had to revert to some medication for him for the first time in 5 years and the slightly pleasant side effect is that it does make him sleep a little better - at least enough that I don't feel like these friends will be expected to pull an 'all-nighter' having to sit up with him the entire night.

       

      So thank you all for giving me the courage to do this - even if it is with performance enhancing drugs and the likely significant financial cost to us in red wine when we stay with them for the next night.  I will remember to chant. "I have no guilt, this is normal & natural" whenever I feel myself slipping into that 'guilt trap'.

       

      Meg, thanks for your flippant throw away line about the 'carers report'.  I haven't even begun to read it - still rumbling with school stuff.  But thanks for the impetus for great conversation/comments.  

       

      Cheers All

       

      Gina

       


--------------------------------------------------------------------------

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Monday, 4 May 2009 6:19 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

       

      Hi there, 

      Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. 

       

      This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called 'innovative options' like 'villages', and 'cluster houses'. This is the difference between what you have identified Gina ie the luxury over 50's developments and what people with disability will get....

       

      Response to contemporary standards claim (2)

      Characteristics of village style accommodation for people without disabilities 

      ?       Used by a wide variety of people of all ages, gender, ethnicity and capacity

      ?       Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out)

      ?       They live there by choice

      ?       They can come and go as they choose

      ?       They have control over their lifestyle (what to wear, what to eat, when to go to bed etc)

      ?       They can make unquestioned risky decisions

      ?       They have control over their financial arrangements/budget

      ?       They can choose who they want to live with and be friends with

      ?       They can choose their recreational activities

      ?       They choose where, when and how they work

      ?       They can move out when they choose.

       

      (This slide is courtesy of Anne Elysee)

       

       

      Catherine

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Monday, 4 May 2009 5:49 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

       

      Thanks Libby

      I am happy to read anything anyone has to say.  As I said in my post this is an area I get very confused about and am trying to understand more about it.  Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues).  And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say.  

       

      I also know I don't have a really good grasp of the variety of living arrangement people choose.  For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity.  I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families.  My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future.

       

      Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say.

       

      Cheers

      Gina


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      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Monday, 4 May 2009 4:30 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

       

      It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again.

       

      Anywho

       

      It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like

       

       - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved

       - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". 

       - wanting to connect to other families interested in governing and running their own supports.

       - working on valued roles in general

       - teaching others. Speaking at conferences and lectures and assisting others to learn.

       

      and so on

       

      I think what I'm saying is that

       - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on.

       - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches.

       

      All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. 

       

      Libby 

       


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From familyvoices at inpress.pledgonline.com  Sun Jun  7 05:33:54 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sun, 7 Jun 2009 20:33:54 +0800
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <3056D92082F342DCBE69B4B308801E98@D8XYGK1S>
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91><66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>	<005e01c9e5e6$7bd64ad0$7382e070$@net.au><F17F59AC7A274931BE041A9A0CE2A596@D8XYGK1S>	<000901c9e63b$eba3cf90$c2eb6eb0$@net.au>
	<3056D92082F342DCBE69B4B308801E98@D8XYGK1S>
Message-ID: <000d01c9e76c$38c9e710$aa5db530$@net.au>

Thanks for that Maureen. I feel like my friend doesn?t always get good
information from neuros about her daughter, or even get the full range of
choices. Can you tell me if Lauren?s seizures were identified as being in
just one part of her brain? I think my friend was told that her daughter
wasn?t a candidate because her daughter?s seizures weren?t localised in one
area...is that your understanding? I might forward your email below to her
if thats ok...it is really tricky and her daughter does exactly what you
describe...80 seizures a day or more.

 

And what would the name of that neurologist be?

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 7 June 2009 6:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

I have had a hectic few days and the first time to get to the computer. I
just wanted to tell you something about Lauren's surgery.

She was the first in Australia to have the Hemispherectomy 12 years ago.
Since then they seem to do them often. They were being performed in Canada
very successfully and the surgeons went from Melbourne to Canada to learn
the technique and when I was gathering all the information I could, it was
all Canadian. At the AACl conference I was sitting next to a woman who's son
had had the very same operation Lauren has had..but, it wasn't as successful
as Lauren. So, it just isn't for everyone.

Recently while in Hobart, I ran into the neurologist who was seeing Lauren
post surgery. He told me he goes to Hobart fortnightly to see patients who
they operate on in Melbourne at the Children's hospital. He told me they are
now doing about 40 operations for epilepsy a year. All different types of
surgery, but they are having some success that is really worth all the
effort.

Epilepsy, when uncontrolled is a real bugger of a thing. It was like living
on the edge of a volcano for our family. New things are happening all the
time and we were very lucky to have it work for Lauren. But we have no idea
if it will ever return, we just hope not. She does suffer incredible head
aches that go on for days some times, but even that is better than 80 fits a
day.

Cheers

Maureen

 

.

 

 

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Saturday, June 06, 2009 10:15 AM

Subject: Re: FV: Hi Gina..re Mac and sleep

 

That surgery is so extra-ordinary...I first heard of it maybe a year ago
when it was on an episode of ?House?. Wow. That is a miracle. Epilepsy is
such a challenge. A dear friend of mine has a daughter who is 17 and has had
uncontrolled seizures since she was 6 and it is so miserable and complex to
support her.  She?s been told she can?t have that surgery...

 

As far as I can tell, the cal/mag/D combo seems to help everyone in one way
or another. It assists with so  many things...and the growing amount of
research in this area suggests that these minerals/hormone combination are
an issue especially with people with ID for some reason. In my anecdotal
experience, it helps some people with their sleep in a profound way and
others not...so no harm in trying. You can get all three in one tablet. The
ones we get are called ?calcium complete?. You need to make sure there is
twice as much calcium as magnesium. The tablets are big and chalky and hard
to swallow..we soak them in a bit of water and stir into eli?s yoghurt, but
you might be able to find a powder. Most adults need at least 1000mg
cal/500mg mag a day...take in two doses one in the morning and one in the
evening.

 

With eli, this is what took him from 90mins sleep a night to 8 -9 hours age
3. He became continent at the same time, exactly....cal/mag has a positive
effect on muscle tone and I wonder if this helped him in some way. I had
actually been taking it for years for pms and period pain...helps a lot with
that so for a woman the week before and during her menstrual period it is
awesome.

 

I stopped giving it to him when he started frisium at age 9 because he slept
without it, and I now regret that hugely because then at age 15 he was
diagnosed with severe osteoporosis. This was a mystery so (again, sigh) we
did the doctor?s job and started researching (we know that osteo can be
caused by epilepsy meds, but it was felt that this wasn?t the culprit). What
we discovered was that osteo is very common where there is ID....but
undiagnosed because people aren?t looking for it. Then we found a study out
of Italy which suggested it is a feature of Angelman. This was entirely
unknown in the Angelman community but I got online and bugged the
international folks who started getting their kids tested and all these
families discovered their kids...as young as 3....with severe osteoporosis.
Actually in Angelman the hormone Vitamin D seems to be the culprit but we
aren?t sure why. Its cool in the sense now many are taking cal/mag/d and
their bones, at least in the kids, are improving slowly.

 

Generally there is a growing belief that most of us lack vitamin D
especially as we stay out of the sun more/use sun block and avoid the few
dietary sources because they have a lot of fat...eg butter, eggs.

 

Chat with your doctor as for everything but I?d give it a go and see...both
for sleep and for pms if that?s relevant.

 

Jaquie J

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Saturday, 6 June 2009 6:24 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Hi Jaquie and Gina

Gina, sounds like your options are good with so much family support around
you. When all the respite people get the idea that flexible respite is the
real answer, we will all get somewhere.

Jaquie, Lauren has had two brain operations. Firstly the corpus callosum
resection she had 20 years ago this week! That divided her brain in half and
kept the seizures in one area. - Successful for a few
years............Then.........she got worse and worse and eventually she had
a partial hemispherectomy and had 2/3 of the right side of her brain
removed. That was 12 years ago this December. She hasn't had a seizure
since. Like a miracle really. She is not on any medication. So most of the
things that were relevant in her life pre surgery are not relevant now.
Apart from the fact that she has developed some terrible sleep habits. 

I think her main problem with the lack of sleep is, she seems to have
developed a habit of being awake. I can't imagine what else it is. She just
doesn't get very tired. Do you think the calcium/magnesium/Vit D combo would
assist her? Does the medication come as 1 tablet? I take Calcium Vit D as a
combo all in one tablet.. Maybe there is one with magnesium as well. Can you
tell me more about this? How does it help Eli?

Off to a family wedding this cool Melbourne morning.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Saturday, June 06, 2009 12:04 AM

Subject: Re: FV: Hi Gina..re Mac and sleep

 

Hey Maureen

 

Have you ever tried the calcium/magnesium/vitamin D combination with Lauren?
Our neuro explained that with some people/kids those night seizures keep
them awake..and that as a mild anti-epileptic this might have been the
reason for eli being so wakeful at night. I guess those myoclonic seizures
most of us have at one time or another falling asleep makes that seem
possible.

 

I guess having had so many conversations with people about the sleep issue I
am a bit cynical about the ?they just don?t need much sleep? theory. This
was the conclusion from the docs with eli but once he started sleeping
?normally? he developed so much faster.

 

The other thing I notice is that often older kids with epilepsy who are on
medication which worked ten years ago aren?t being offered some of the newer
meds...its quite expensive but when eli started taking frisium plus topamax,
his sleep pattern improved again, going from 8 hours consistently to 12
hours plus, and his alertness was amazing. The results of that in terms of
his cognitive ability have been brilliant. The thing is, people with
epilepsy generally need more sleep, not less.

 

I think with our kids the medical folks seem try one or two things and then
stick us in the too hard basket....it has been from other parents that I?ve
learned most of the medical knowledge I needed to make eli?s life as good as
it could be.

 

Sweet dreams folks...I wish a happy sleep to everyone tonight.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 8:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

HI Jane/Gina

Yes Mac does sound like a star and so do you both!

I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.

Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.

It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.

However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.

At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.

Good luck ladies. I think you are doing an amazing job.

Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)

 

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 05, 2009 9:39 AM

Subject: Re: FV: Hi Gina..re Mac and sleep

 

Hi Gina

 

Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  

 

Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?

 

I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  

I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha

 

I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.

 

Hang in there I too think you are doing an amazing job and Mac sounds like a
star.

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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  

 

We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  

 

We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).

 

The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.

 

Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  

 

We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.

 

Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)

 

Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!

 

One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.

 

Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.

 

Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.

 

My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:

 

1.      Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.

Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.

2.      The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.

3.      Does Mac have epilepsy? There are some other/different strategies if
this is the case, perhaps.

 

I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.

 

Jaquie 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep

 

Jaquie

 

Yes please, I am always keen to hear anything on sleep.

 

I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.

 

There are a few reasons we think Mac doesn?t sleep including any of the
following:

-        cortical vision blindness meaning he may not be getting enough
daylight brain messaging to inhibit the release of melatonin during the day
then there isn?t a good enough supply to get him through the night

-        same deal with the production of serotonin ie not enough to keep
him asleep through the night.

-        he is a nose breather so any nasal congestion causes him to get
very stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.

-        he is so incredibly tight in his muscles he turns into a pretzel
and is totally uncomfortable after a sleep stint of three-four hours no
matter what position you put him in.

-        he is naughty ? he cries for attention and is totally devastated
until you touch or speak to him, then he grins the biggest naughtiest grin ?
ugh  It has improved however, he used to poke his tongue out and make
himself gag and then projectile vomit for attention until we managed to
remove the projectile vomiting out of his ?list of talents?.

-        he used to get very stressed by the dark and quiet.  He used to
only cope if the lights were on and the tv on ? we have managed to wean him
out of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.

-        He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.

-        On the nights we have used valergan he has slept all night and some
nights only being rolled in the early hours of the morning but not being any
more uncomfortable when he wakes up, so not sure what that tells us.  We
wondered whether a memory foam mattress or a water bed could be beneficial
for him.

 

As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.

 

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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep

 

Hi Gina, and folks

 

I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!

 

Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Catherine & Meg

 

Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits


 

And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.

 

BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.

 

We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.

 

So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.

 

Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  

 

Cheers All

 

Gina

 


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Hi there, 

Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 

 

This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....

 

Response to contemporary standards claim (2)

Characteristics of village style accommodation for people without
disabilities 

?       Used by a wide variety of people of all ages, gender, ethnicity and
capacity

?       Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)

?       They live there by choice

?       They can come and go as they choose

?       They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)

?       They can make unquestioned risky decisions

?       They have control over their financial arrangements/budget

?       They can choose who they want to live with and be friends with

?       They can choose their recreational activities

?       They choose where, when and how they work

?       They can move out when they choose.

 

(This slide is courtesy of Anne Elysee)

 

 

Catherine

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

Thanks Libby

I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  

 

I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.

 

Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.

 

Cheers

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

 

It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.

 

Anywho

 

It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like

 

 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved

 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 

 - wanting to connect to other families interested in governing and running
their own supports.

 - working on valued roles in general

 - teaching others. Speaking at conferences and lectures and assisting
others to learn.

 

and so on

 

I think what I'm saying is that

 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.

 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.

 

All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 

 

Libby 

 


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From familyvoices at inpress.pledgonline.com  Sun Jun  7 06:14:15 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sun, 7 Jun 2009 23:14:15 +1000
Subject: FV: Hi Gina..re Mac and sleep
In-Reply-To: <000d01c9e76c$38c9e710$aa5db530$@net.au>
Message-ID: <7tb87v$b2ar7t@ipmail01.adl6.internode.on.net>

Hey Jaquie
 
I am assuming 11 years on your friend has exhausted pretty much every option
but we have had friends who have very good success with the specific
carbohydrate diet see  <http://www.pecanbread.com> www.pecanbread.com and
<http://www.breakingthevisciouscycle.com> www.breakingthevisciouscycle.com
This is different to Keto, much safer I think.
 
>From what I have witnessed lots of the parents I know with very physically
compromised kids eg those that aren?t ?walkers? actually have more scope to
try things as they don?t have the same risks associated with drop seizures,
injuries from falling etc.  And many of the parents who choose the
medication free route (some do masking some just ride out the seizures)
comment on the fact they generally get to see much better gains (cognitive
and physical) after the big seizures ? but again, they can generally take
this approach because of the absence of mobility.  And as much as I would
love to see some big gains for Mac I think I will stick with being seizure
free for the time being ? that is not something I am ready to add to the mix
just yet :-)
Gina
 
 
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 7 June 2009 10:34 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Thanks for that Maureen. I feel like my friend doesn?t always get good
information from neuros about her daughter, or even get the full range of
choices. Can you tell me if Lauren?s seizures were identified as being in
just one part of her brain? I think my friend was told that her daughter
wasn?t a candidate because her daughter?s seizures weren?t localised in one
area...is that your understanding? I might forward your email below to her
if thats ok...it is really tricky and her daughter does exactly what you
describe...80 seizures a day or more.
 
And what would the name of that neurologist be?
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 7 June 2009 6:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
I have had a hectic few days and the first time to get to the computer. I
just wanted to tell you something about Lauren's surgery.
She was the first in Australia to have the Hemispherectomy 12 years ago.
Since then they seem to do them often. They were being performed in Canada
very successfully and the surgeons went from Melbourne to Canada to learn
the technique and when I was gathering all the information I could, it was
all Canadian. At the AACl conference I was sitting next to a woman who's son
had had the very same operation Lauren has had..but, it wasn't as successful
as Lauren. So, it just isn't for everyone.
Recently while in Hobart, I ran into the neurologist who was seeing Lauren
post surgery. He told me he goes to Hobart fortnightly to see patients who
they operate on in Melbourne at the Children's hospital. He told me they are
now doing about 40 operations for epilepsy a year. All different types of
surgery, but they are having some success that is really worth all the
effort.
Epilepsy, when uncontrolled is a real bugger of a thing. It was like living
on the edge of a volcano for our family. New things are happening all the
time and we were very lucky to have it work for Lauren. But we have no idea
if it will ever return, we just hope not. She does suffer incredible head
aches that go on for days some times, but even that is better than 80 fits a
day.
Cheers
Maureen
 
.
 
 
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Saturday, June 06, 2009 10:15 AM
Subject: Re: FV: Hi Gina..re Mac and sleep
 
That surgery is so extra-ordinary...I first heard of it maybe a year ago
when it was on an episode of ?House?. Wow. That is a miracle. Epilepsy is
such a challenge. A dear friend of mine has a daughter who is 17 and has had
uncontrolled seizures since she was 6 and it is so miserable and complex to
support her.  She?s been told she can?t have that surgery...
 
As far as I can tell, the cal/mag/D combo seems to help everyone in one way
or another. It assists with so  many things...and the growing amount of
research in this area suggests that these minerals/hormone combination are
an issue especially with people with ID for some reason. In my anecdotal
experience, it helps some people with their sleep in a profound way and
others not...so no harm in trying. You can get all three in one tablet. The
ones we get are called ?calcium complete?. You need to make sure there is
twice as much calcium as magnesium. The tablets are big and chalky and hard
to swallow..we soak them in a bit of water and stir into eli?s yoghurt, but
you might be able to find a powder. Most adults need at least 1000mg
cal/500mg mag a day...take in two doses one in the morning and one in the
evening.
 
With eli, this is what took him from 90mins sleep a night to 8 -9 hours age
3. He became continent at the same time, exactly....cal/mag has a positive
effect on muscle tone and I wonder if this helped him in some way. I had
actually been taking it for years for pms and period pain...helps a lot with
that so for a woman the week before and during her menstrual period it is
awesome.
 
I stopped giving it to him when he started frisium at age 9 because he slept
without it, and I now regret that hugely because then at age 15 he was
diagnosed with severe osteoporosis. This was a mystery so (again, sigh) we
did the doctor?s job and started researching (we know that osteo can be
caused by epilepsy meds, but it was felt that this wasn?t the culprit). What
we discovered was that osteo is very common where there is ID....but
undiagnosed because people aren?t looking for it. Then we found a study out
of Italy which suggested it is a feature of Angelman. This was entirely
unknown in the Angelman community but I got online and bugged the
international folks who started getting their kids tested and all these
families discovered their kids...as young as 3....with severe osteoporosis.
Actually in Angelman the hormone Vitamin D seems to be the culprit but we
aren?t sure why. Its cool in the sense now many are taking cal/mag/d and
their bones, at least in the kids, are improving slowly.
 
Generally there is a growing belief that most of us lack vitamin D
especially as we stay out of the sun more/use sun block and avoid the few
dietary sources because they have a lot of fat...eg butter, eggs.
 
Chat with your doctor as for everything but I?d give it a go and see...both
for sleep and for pms if that?s relevant.
 
Jaquie :-)
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Saturday, 6 June 2009 6:24 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Hi Jaquie and Gina
Gina, sounds like your options are good with so much family support around
you. When all the respite people get the idea that flexible respite is the
real answer, we will all get somewhere.
Jaquie, Lauren has had two brain operations. Firstly the corpus callosum
resection she had 20 years ago this week! That divided her brain in half and
kept the seizures in one area. - Successful for a few
years............Then.........she got worse and worse and eventually she had
a partial hemispherectomy and had 2/3 of the right side of her brain
removed. That was 12 years ago this December. She hasn't had a seizure
since. Like a miracle really. She is not on any medication. So most of the
things that were relevant in her life pre surgery are not relevant now.
Apart from the fact that she has developed some terrible sleep habits. 
I think her main problem with the lack of sleep is, she seems to have
developed a habit of being awake. I can't imagine what else it is. She just
doesn't get very tired. Do you think the calcium/magnesium/Vit D combo would
assist her? Does the medication come as 1 tablet? I take Calcium Vit D as a
combo all in one tablet.. Maybe there is one with magnesium as well. Can you
tell me more about this? How does it help Eli?
Off to a family wedding this cool Melbourne morning.
Maureen
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Saturday, June 06, 2009 12:04 AM
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Hey Maureen
 
Have you ever tried the calcium/magnesium/vitamin D combination with Lauren?
Our neuro explained that with some people/kids those night seizures keep
them awake..and that as a mild anti-epileptic this might have been the
reason for eli being so wakeful at night. I guess those myoclonic seizures
most of us have at one time or another falling asleep makes that seem
possible.
 
I guess having had so many conversations with people about the sleep issue I
am a bit cynical about the ?they just don?t need much sleep? theory. This
was the conclusion from the docs with eli but once he started sleeping
?normally? he developed so much faster.
 
The other thing I notice is that often older kids with epilepsy who are on
medication which worked ten years ago aren?t being offered some of the newer
meds...its quite expensive but when eli started taking frisium plus topamax,
his sleep pattern improved again, going from 8 hours consistently to 12
hours plus, and his alertness was amazing. The results of that in terms of
his cognitive ability have been brilliant. The thing is, people with
epilepsy generally need more sleep, not less.
 
I think with our kids the medical folks seem try one or two things and then
stick us in the too hard basket....it has been from other parents that I?ve
learned most of the medical knowledge I needed to make eli?s life as good as
it could be.
 
Sweet dreams folks...I wish a happy sleep to everyone tonight.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 5 June 2009 8:17 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
HI Jane/Gina
Yes Mac does sound like a star and so do you both!
I just wish I had all this support and information when Lauren was little.
She will be 25 on Sunday.
Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch
pushed her in the pram around the suburbs so the other children (and me) in
the house could rest and get some sleep.
It went on for years not just as a bub. She would fit all night in her sleep
and I used to sit beside her so she wouldn't choke/suffocate or die.
Absolutely horrible time for us.
However, now that is not the case, what we have is a night owl. She never
goes to bed before 3.30am! No matter what we do or say, she is use to
staying awake long hours. She doesn't need or have allot of sleep. She has
created her own monster. She realises it is anti-social and not normal to be
up all night every night. But that's how it goes. She is difficult to travel
with but at 25 we have to realise she has to live her own life. This all
started back as a bub when she was "afraid" to go to sleep.
At the time when she was so ill, there really wasn't anyone who could assist
us, with all the sleep issues and we were very stressed.
Good luck ladies. I think you are doing an amazing job.
Oh, I just want to say something else. With Lauren turning 25 on Sunday.
well. I never thought she'd make it and I never thought I would either.  We
have both made it. I feel she has been in my life for the 60 years I have
been here. I can't remember life without her, she has had such a huge impact
on me. I am sure she was joined to my hip way way way back! Amazing
really....(am I alone here?)
 
Maureen
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Friday, June 05, 2009 9:39 AM
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Hi Gina
 
Do you know why Mac does not sleep?  Dumb question I know but my brain only
works in small steps.  Probably from old age, sleepless nights and too many
red wines.  
 
Anyway, from what I have read quickly is, if you sat or sit up with Mac he
is happy and then day light comes and he sleeps is that right.?
 
I have a bit of experience too in this area, Sarah had Sleep apnea in a big
way when she was littler I don?t think they called it that then but the long
and short was when she went into REM her airways would collapse she would
not be able to breathe the brain would tell her to wake up it then the brain
told her not to go to sleep.  
I have a fantastic Respiratory Specialist who I used to call God in those
days he worked in a catholic hospital so that was big he was also very
pleasing on the eye so that made the sleepless nights bearable. Ha Ha
 
I won?t go into our journey unless you think is worthwhile but more than
happy if you think it could be of help.  One thing we did journey down was
tonsils out at 6 months bloody terrible but I trusted the persons so I used
the gut instinct and it come thru along with a whole host of other stuff.
 
Hang in there I too think you are doing an amazing job and Mac sounds like a
star.
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: Tuesday, June 02, 2009 9:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Ahhh, thank you, thank you
 I had forgotten about Cal/Mag sups but not sure
I knew to combine with the Vit D so that is great info.  
 
We tried on a number of occasions to get the info on them and the go ahead
from Doctors but for a long time never had any willing supporters.
Eventually we did get a mag/cal combo in a powdered form which I still have
in the cupboard.  We stopped when we went onto an elimination diet of sorts
and I never reinstated them.    We changed his eating around so at night he
has bananas, egg and porridge as there is some natural melatonin in both
bananas and oats and eggs are supposedly meant to help increase tryptophan
levels and subsequently increase serotonin production.  Thank you for
reminding me ? I will check that out with the Vit D combo information and
see what regime I can implement.  
 
We used to do a lettuce juice tube feed at night (lettuce has natural
opiates) and it worked occasionally but not enough to make it an ongoing
regime ? more pain than gain (until I get a really great grinding juicer

still saving up for that one).
 
The other supplement I was going to find out about was 5-HTP which is
apparently a tryptophan supplement to help with that serotonin production I
have seen some of the information around ADHD talk about that ? don?t even
know if it is available in Australia as it has only come to my attention as
a possible thing to investige in the last fortnight.
 
Apparently (courtesy of some kinesiology testing by a GP in Sydney who I
didn?t? return to as she charges by the minute!!!) he doesn?t have any food
allergies or intolerances but supposedly does have sensitivities to chlorine
and formaldehyde.  Chlorine isn?t a problem except for summer when we go
swimming as we aren?t on town water.  Formaldehyde on the other hand could
be a contributor as in my wisdom of better insulation in his bedroom I laid
a plywood floor over the existing flooring and have a number of cupboards in
his room that are Ikea varieties, both the ply and laminated cupboards would
be giving off formaldehyde gasses.  
 
We are considering moving him to a different room to see if that makes any
difference ? just need to decide whether I need to lift up the foam tiled
rubber flooring for the same reason.  I have one friend who knows a lot more
than me about plants also researching to see if there is benefit in certain
varieties of indoor plants that are suitable for bedrooms that would absorb
any of those chemical gasses ? ha ha
 as I indicated we are really getting
to the pointy end of options.  Sometimes I just laugh at the options we are
at they sometimes seem so totally ?out there?.
 
Surgery might be an option down the track in a few years if we are still
having issues.  We have looked at surgery options in the past but our
problem to date is until he gets mouth breathing as a consistent we can?t
risk taking adenoids as currently they act as a shelf stopping any food
getting stuck up his nose ? was more of a problem when he was a projectile
vom-monster than now, but there is still that issue if he gets anything
blocking it he could get into real trouble.  We are reluctant to remove
tonsils as they are not oversize, doesn?t get any infections in them and
currently they assist in providing some additional structure to the
otherwise compromised physical strength of his neck.  I am fairly confident
in the physical therapy we do that we will eventually get these changes to
all this nasal/neck/jaw area (if I just push it along a bit more)
 
Mac doesn?t have epilepsy so not sure if there are other options to
consider.  The brain injury was diffuse damage to every part so the lack of
epilepsy is quite surprising, but boy, do I love being out of the grips of
the neurologists!
 
One other therapy we will consider finding out more about is the light
therapy.  As I understand it you have a light with certain lumens or
something that is on for set times during the day with the goal being to
again stop the release of melatonin during the day ? I am not sure if this
would even be doable, particularly with school, so it is way down the list
of options at this stage.
 
Seemingly the benefits of sleep deprivation mean you get to research sleep
deprivation quite significantly.  Mac used be such a toad that Shawn would
shift to a different room, I?d put the light and tv on and prop Mac up in
the corner of the bed so he could happy watch inappropriate TV shows
?glaarring? with pleasure at getting his own way yet again, and I would go
and get the computer, do my work/payroll etc at 3am sitting next to Mac in
bed and then poke around on the internet for any information I could find
until the nocturnal child decided it was daytime and therefore an
appropriate time to go to sleep - ugh.
 
Mac is unwell at the moment with a really bad cold (might even be Boy Flu
they way he has been groaning and moaning with it).  Funnily, whenever we
ask him if he is getting better he feigns a ?bad cough? with a sly grin or
evil glint in his eye.  Hmmm, he can have one more day off school then it?s
back to the grindstone for him.  
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 2 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Wow...you guys have been through a lot and worked out a heap of strategies.
This kind of challenge for me is what parents miss out getting support
with...most people just have no idea about the complexity of what we deal
with. I hope you know how awesome you are.
 
My experience is with Angelman...where again it seems to be a magical
combination of strategies which work. There are two I can offer which you
haven?t listed:
 
1.       Calcium/magnesium/vitamin d supplements. This was the magic formula
for Eli to start sleeping through the night. Cal/mag do a number of things
from being a mild anti-epileptic /calming factor for our nervous system, to
helping tight muscles relax their tone. Given that this is a challenge for
Mac it could be worth a try. See your GP for recommended doses for a little
kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of
Vit D. These three nutrients work together and you can?t absorb/make one
work without the other. I?m no longer especially into ?natural?
therapies...there is quite a bit of mainstream research confirming the
significance of these three nutrients...and the common nature of
deficiencies in them. Eli?s endocrinologist said he?d like all teenagers to
be on this combination, they are so important and so much bone is laid down
in teen years. The data shows that where even young people have intellectual
disabilities, the rates of osteoporosis are much higher, so good general
practice for our kids. Having a teenager with severe osteo I can tell you it
isn?t a fun outsome.
Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to
sleeping 8-12 hours a night after just a few days on this combination. It
doesn?t help all kids, but is worth a try.
2.       The breathing issue is one which is common in angelman too...and
surgery gets the best results. This may sound extreme, but I have seen so
many kids do so much better...in terms of sleep, health and cognitive
function after having adenoids and/or tonsils removed. I think it is early
days for Mac to be considering this, but something you might want to think
about at some stage. Again...I am very anti surgery...but so many families
have had such a huge improvement in quality of life where there is a
significant problem. If I could have my time over, I?d have this looked at
for Eli. If you wanted to email with other parents who had this surgery done
on their young children I could put you in touch.
3.       Does Mac have epilepsy? There are some other/different strategies
if this is the case, perhaps.
 
I?d love to know if any of the above could help. I think you are awesome
even being up for this discussion when you are long term sleep deprived.
 
Jaquie 
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 7:20 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi Gina..re Mac and sleep
 
Jaquie
 
Yes please, I am always keen to hear anything on sleep.
 
I have one other non-medication combo I think I can try that I know of, but
maybe haven?t exhausted all avenues after all.  Still have some music
options to try, then some bed/mattress options ? although beds/mattresses
are the expensive things to have ?not work? so they are my last resort.
 
There are a few reasons we think Mac doesn?t sleep including any of the
following:
-          cortical vision blindness meaning he may not be getting enough
daylight brain messaging to inhibit the release of melatonin during the day
then there isn?t a good enough supply to get him through the night
-          same deal with the production of serotonin ie not enough to keep
him asleep through the night.
-          he is a nose breather so any nasal congestion causes him to get
very stressed because he can?t physically breath through his mouth without
significant difficultly ? we used to wonder why he coughed all night in the
winter months till we worked out that was the only way he could actually
breathe he had to rely on the coughing propulsion of air to allow the flow
in and out since he couldn?t mouth breathe (gave back our parents of the
year award for that one ha ha).  As we continue to get gains in his physical
structure around his nose, jaw etc I expect this to improve to allow him to
return to both nose/mouth breathing like we do ? just doesn?t help him in
the interim period.
-          he is so incredibly tight in his muscles he turns into a pretzel
and is totally uncomfortable after a sleep stint of three-four hours no
matter what position you put him in.
-          he is naughty ? he cries for attention and is totally devastated
until you touch or speak to him, then he grins the biggest naughtiest grin ?
ugh  It has improved however, he used to poke his tongue out and make
himself gag and then projectile vomit for attention until we managed to
remove the projectile vomiting out of his ?list of talents?.
-          he used to get very stressed by the dark and quiet.  He used to
only cope if the lights were on and the tv on ? we have managed to wean him
out of that by using the melatonin supplements and some white noise ? now he
copes pretty well regardless.
-          He hits his peak interactive period around 8pm onwards and being
selfish parents we hate missing that part of his life, we love hearing the
new sounds, enjoying the increased level of alertness and awareness and
interaction so we probably have let him stay up too late for too many years
(although there is research to show stroke patients do their best learning
in the evening hours as their bodies take longer to get certain hormones etc
out of their system through the day so there may be something in that aspect
considering Mac?s bran injury probably has some similar components) ? but
mostly I think it is us wanting to enjoy him in that moment.
-          On the nights we have used valergan he has slept all night and
some nights only being rolled in the early hours of the morning but not
being any more uncomfortable when he wakes up, so not sure what that tells
us.  We wondered whether a memory foam mattress or a water bed could be
beneficial for him.
 
As you can see we haven?t done very well narrowing the list of potential
contributors down so feel free to share away.  While the sleep deprivation
is debilitating for us and him, the difference in him when he has had the
full night sleep albeit ?valergan? enhanced to combat his recent hayfever
and sinus infections he is noticeably improved in his alertness, awareness
and interactivity ? he needs us to keep on trying to find answers to the
sleep issue for him.
 
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: Monday, 1 June 2009 7:03 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hi Gina..re Mac and sleep
 
Hi Gina, and folks
 
I am at a conference and trying to catch up on my emails during the boring
bits..so far got rid of more than 1000 of them and feeling smug!
 
Gina, I only just finished reading your post below, and wondered if you
wanted to talk about sleep. Do you know why Mac doesn?t sleep? We went
through the whole sleep disorder thing with Eli...angelman is notoriously
difficult in terms of sleep and I might know some stuff you haven?t
tried/heard about...let me know if you are interested in discussing. I
reckon sleep deprivation is one of the most difficult things us parents have
to deal with.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 9:37 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Catherine & Meg
 
Catherine, That is great information
 thank you.  I do want all of that for
every person (of course with the added benefit of it being fully accessible
with built in discreet ceiling tracking, automatic wider doors & taps,
Japanese style bidet toilets, fully accessible bathrooms with turning
circles and lifts ? so that an otherwise unlikely candidate for independence
has the best shot at independence).  Mental note to self
 must change
Australian Building Standards when time permits

 
And I can see how Young Care is different to that model  but still don?t
know what to wish for when it comes to those too young to be in aged care
facilities and who have nowhere else to go, or for those imprisoned in their
homes because, through no fault of their own, true access to their community
has been hard to achieve and I guess my na?ve belief in all this is that by
Young Care providing a middle ground for these people they can then
redevelop relationships, create friendships and then possibly choose to move
on from that model.    It is a very happy shiny place in my world ? I can
often assume things will simply exist when they don?t.
 
BUT you might be pleased to know we have just taken a very big step for us,
and only agreed to because I have taken what you have all said very
seriously.
 
We have to attend a birthday party in Wagga this weekend and while we wanted
to attend the party without Mac we still wanted him over in Wagga for the
rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going
to look after him on Saturday night.  This is huge from our perspective ? we
don?t ask friends to babysit- mostly because Mac simply just doesn?t sleep
but also because he just isn?t a disruptive child ? he is only hard work
over night so he is easy to take out and about with us.  I feel a bit of a
fake as he has been a little unwell and we have had to revert to some
medication for him for the first time in 5 years and the slightly pleasant
side effect is that it does make him sleep a little better ? at least enough
that I don?t feel like these friends will be expected to pull an
?all-nighter? having to sit up with him the entire night.
 
So thank you all for giving me the courage to do this ? even if it is with
performance enhancing drugs and the likely significant financial cost to us
in red wine when we stay with them for the next night.  I will remember to
chant
 ?I have no guilt, this is normal & natural? whenever I feel myself
slipping into that ?guilt trap?.
 
Meg, thanks for your flippant throw away line about the ?carers report?.  I
haven?t even begun to read it ? still rumbling with school stuff.  But
thanks for the impetus for great conversation/comments.  
 
Cheers All
 
Gina
 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 6:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Hi there, 
Just about to switch off computer and go home, but thought I would add
another two bobs worth to this thread. 
 
This is a abstract taken from a powerpoint presentation that was given in
2007 to state funded advocacy agencies in NSW. It was part of a paper that
was developed to assist advocates in their arguments against redevelopment
of institutions and the introduction of so called ?innovative options? like
?villages?, and ?cluster houses?. This is the difference between what you
have identified Gina ie the luxury over 50?s developments and what people
with disability will get....
 
Response to contemporary standards claim (2)
Characteristics of village style accommodation for people without
disabilities 
*         Used by a wide variety of people of all ages, gender, ethnicity
and capacity
*         Residents have ownership or tenancy rights (They cannot be
arbitrarily relocated from one unit to another or be thrown out)
*         They live there by choice
*         They can come and go as they choose
*         They have control over their lifestyle (what to wear, what to eat,
when to go to bed etc)
*         They can make unquestioned risky decisions
*         They have control over their financial arrangements/budget
*         They can choose who they want to live with and be friends with
*         They can choose their recreational activities
*         They choose where, when and how they work
*         They can move out when they choose.
 
(This slide is courtesy of Anne Elysee)
 
 
Catherine
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 5:49 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
Thanks Libby
I am happy to read anything anyone has to say.  As I said in my post this is
an area I get very confused about and am trying to understand more about it.
Points I raise aren?t necessarily something I would choose to do but I want
to make sure I understand motivations behind choices people make to ensure I
don?t deny anyone their choices (provided as Anita says they are made after
being fully aware of the issues).  And therefore they are things I want to
see discussed and I will never get offended by anything anyone has to say.  
 
I also know I don?t have a really good grasp of the variety of living
arrangement people choose.  For example, there has been the recent increase
in luxury housing developments for the over 50s ? I assume from that there
must be a market and therefore from that I must accept that some people like
living in that type of community where there is less age diversity.  I live
on the family farm ? there are three families on our farm ? my sister?s
family and my parents and us, the adjoining 3 farms are all my aunts,
uncles, cousins etc where there are 7 families.  My son, Mac is sixth
generation on this property ? so I am mindful we have a pretty safe haven at
this stage of our lives and am aware I need to understand more about why
people choose to live where and how they do and also be sure that just
because this is my safe haven it could be very isolating for Mac if we
aren?t smart about his options for the future.
 
Please keep any conversations and insights around this issue going ? I love
it all and appreciate all everyone has to say.
 
Cheers
Gina

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 4 May 2009 4:30 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Reciprocal visit and inclusion movement - Meg
 
It's interesting this thread. I wanted to comment on families being too
exhausted to fight for anything more than their survival, and this makes the
possibility of institutions coming back more likely. However the
conversation seems to have moved on real fast!!! It's great really. Gina's
post I think could do with some discussion - so I'll ponder on what she has
said and perhaps post again.
 
Anywho
 
It's interesting in my work, I find that families get really energised
(despite their hectic, exhausting etc etc lives) when they are working on
things that are actually exciting, will bring meaning to their children's
lives and are life-giving or life-affirming (in Kendrick's words). So people
can find energy or can re-gain energy when the work is actually energising.
In my work it has been interesting to see what parents get energised about.
They are things like
 
 - all the work it takes to get their kid to be involved in a youth group.
This involves meetings, training, writing information, liaising with leaders
and assistants. It has now expanded with this parent interested in talking
to schools and other youth centres about how they can get involved
 - assisting their son/daughter get a real job. From total depression about
their son being out of work since school - passivity when we first met,
given up, not knowing what to do. We found an opportunity and then it was
"what can I do to assist here?". 
 - wanting to connect to other families interested in governing and running
their own supports.
 - working on valued roles in general
 - teaching others. Speaking at conferences and lectures and assisting
others to learn.
 
and so on
 
I think what I'm saying is that
 - we should assume that even exhausted people can find energy to work on
things they are truly energised about. It's up to us to ask the question of
what would energise, excite and interest them? This moves from buying into
the passivity discourse and actually doing something about it. By doing this
we are then tackling the re-emergence of institutionalisation head on.
 - we can structure things so that this actually happens. The system that
makes these exhausted people can also unmake them with some different
questions and different approaches.
 
All the endless meetings about 'lack of respite' and 'carers burden' and 'no
money in the system', 'unmet need' etc etc. These are important political
issues but can also serve to make people victims and instill inertia. 
 
Libby 
 

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From familyvoices at inpress.pledgonline.com  Sun Jun  7 16:37:45 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 8 Jun 2009 09:37:45 +1000
Subject: FV: Hi Gina..re Mac and sleep
References: <002d01c9e35d$89f3cdd0$9ddb6970$@net.au><7sroog$bokpr0@ipmail05.adl2.internode.on.net>	<D2A1A9903B5E4FCCB4947CB39C217D47@dell91><66B8893AC68446E19F87AC3FAAB7B844@D8XYGK1S>	<005e01c9e5e6$7bd64ad0$7382e070$@net.au><F17F59AC7A274931BE041A9A0CE2A596@D8XYGK1S>	<000901c9e63b$eba3cf90$c2eb6eb0$@net.au><3056D92082F342DCBE69B4B308801E98@D8XYGK1S>
	<000d01c9e76c$38c9e710$aa5db530$@net.au>
Message-ID: <CF0DF1C4A4B744BD8055EA7672D3572C@D8XYGK1S>

Jaquie
I have no probs if you want to pass my email on. If it can assist some one that is wonderful
Yes you are right about being able to identify the area of the brain the seizures come from. Lauren has had a stroke at birth, so the area of the brain that was damaged was evident even before the scans were done, because of her physical disability. However, very extensive tests were done prior to surgery. For instance we went through neuro psychology for months, then all the scans and weeks in the hospital while she was observed connected to EEG machines that photographed her.  All this led them to the first op which was the Corpus Callosum resection where they almost completely divided her brain in half.- It is 20 years ago now and I have tried to forget it! But I think there is 5/8ths in tact, I think that is what they told us at the time.
Once they had done that the seizures all stayed in one area. She was still fitting, but no drop attacks and the seizures changed to myoclonic jerks. So, then the seizures were definitely coming from the effected brain damaged area. Then with the Hemispherectomy, they removed all the damaged area.
Simon Harvey is the neurologist at the Kids who is now the Dr in charge and he took over from Ian Hopkins who was Lauren's neuro but he has now retired. There is a "team"of surgeons there now. However, Mr Klug did Lauren's surgery both times and I think Pro. Rosenthal is doing them as is a woman who I think her name is something ,like Wirginia (Like Virginia but pronounced with a W...I don't know the surname..) Simon is the doctor we ran in to in Hobart. he is very easy to speak to and "user friendly!"
I hope this all helps.
We are off to the footy today. Go Pies!!
Cheers
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Sunday, June 07, 2009 10:33 PM
  Subject: Re: FV: Hi Gina..re Mac and sleep


  Thanks for that Maureen. I feel like my friend doesn't always get good information from neuros about her daughter, or even get the full range of choices. Can you tell me if Lauren's seizures were identified as being in just one part of her brain? I think my friend was told that her daughter wasn't a candidate because her daughter's seizures weren't localised in one area...is that your understanding? I might forward your email below to her if thats ok...it is really tricky and her daughter does exactly what you describe...80 seizures a day or more.

   

  And what would the name of that neurologist be?

   

  Jaquie J

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Sunday, 7 June 2009 6:51 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi Gina..re Mac and sleep

   

  Jaquie

  I have had a hectic few days and the first time to get to the computer. I just wanted to tell you something about Lauren's surgery.

  She was the first in Australia to have the Hemispherectomy 12 years ago. Since then they seem to do them often. They were being performed in Canada very successfully and the surgeons went from Melbourne to Canada to learn the technique and when I was gathering all the information I could, it was all Canadian. At the AACl conference I was sitting next to a woman who's son had had the very same operation Lauren has had..but, it wasn't as successful as Lauren. So, it just isn't for everyone.

  Recently while in Hobart, I ran into the neurologist who was seeing Lauren post surgery. He told me he goes to Hobart fortnightly to see patients who they operate on in Melbourne at the Children's hospital. He told me they are now doing about 40 operations for epilepsy a year. All different types of surgery, but they are having some success that is really worth all the effort.

  Epilepsy, when uncontrolled is a real bugger of a thing. It was like living on the edge of a volcano for our family. New things are happening all the time and we were very lucky to have it work for Lauren. But we have no idea if it will ever return, we just hope not. She does suffer incredible head aches that go on for days some times, but even that is better than 80 fits a day.

  Cheers

  Maureen

   

  .

   

   

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Saturday, June 06, 2009 10:15 AM

    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    That surgery is so extra-ordinary...I first heard of it maybe a year ago when it was on an episode of 'House'. Wow. That is a miracle. Epilepsy is such a challenge. A dear friend of mine has a daughter who is 17 and has had uncontrolled seizures since she was 6 and it is so miserable and complex to support her.  She's been told she can't have that surgery...

     

    As far as I can tell, the cal/mag/D combo seems to help everyone in one way or another. It assists with so  many things...and the growing amount of research in this area suggests that these minerals/hormone combination are an issue especially with people with ID for some reason. In my anecdotal experience, it helps some people with their sleep in a profound way and others not...so no harm in trying. You can get all three in one tablet. The ones we get are called 'calcium complete'. You need to make sure there is twice as much calcium as magnesium. The tablets are big and chalky and hard to swallow..we soak them in a bit of water and stir into eli's yoghurt, but you might be able to find a powder. Most adults need at least 1000mg cal/500mg mag a day...take in two doses one in the morning and one in the evening.

     

    With eli, this is what took him from 90mins sleep a night to 8 -9 hours age 3. He became continent at the same time, exactly....cal/mag has a positive effect on muscle tone and I wonder if this helped him in some way. I had actually been taking it for years for pms and period pain...helps a lot with that so for a woman the week before and during her menstrual period it is awesome.

     

    I stopped giving it to him when he started frisium at age 9 because he slept without it, and I now regret that hugely because then at age 15 he was diagnosed with severe osteoporosis. This was a mystery so (again, sigh) we did the doctor's job and started researching (we know that osteo can be caused by epilepsy meds, but it was felt that this wasn't the culprit). What we discovered was that osteo is very common where there is ID....but undiagnosed because people aren't looking for it. Then we found a study out of Italy which suggested it is a feature of Angelman. This was entirely unknown in the Angelman community but I got online and bugged the international folks who started getting their kids tested and all these families discovered their kids...as young as 3....with severe osteoporosis. Actually in Angelman the hormone Vitamin D seems to be the culprit but we aren't sure why. Its cool in the sense now many are taking cal/mag/d and their bones, at least in the kids, are improving slowly.

     

    Generally there is a growing belief that most of us lack vitamin D especially as we stay out of the sun more/use sun block and avoid the few dietary sources because they have a lot of fat...eg butter, eggs.

     

    Chat with your doctor as for everything but I'd give it a go and see...both for sleep and for pms if that's relevant.

     

    Jaquie J

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Saturday, 6 June 2009 6:24 AM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi Gina..re Mac and sleep

     

    Hi Jaquie and Gina

    Gina, sounds like your options are good with so much family support around you. When all the respite people get the idea that flexible respite is the real answer, we will all get somewhere.

    Jaquie, Lauren has had two brain operations. Firstly the corpus callosum resection she had 20 years ago this week! That divided her brain in half and kept the seizures in one area. - Successful for a few years............Then.........she got worse and worse and eventually she had a partial hemispherectomy and had 2/3 of the right side of her brain removed. That was 12 years ago this December. She hasn't had a seizure since. Like a miracle really. She is not on any medication. So most of the things that were relevant in her life pre surgery are not relevant now. Apart from the fact that she has developed some terrible sleep habits. 

    I think her main problem with the lack of sleep is, she seems to have developed a habit of being awake. I can't imagine what else it is. She just doesn't get very tired. Do you think the calcium/magnesium/Vit D combo would assist her? Does the medication come as 1 tablet? I take Calcium Vit D as a combo all in one tablet.. Maybe there is one with magnesium as well. Can you tell me more about this? How does it help Eli?

    Off to a family wedding this cool Melbourne morning.

    Maureen

      ----- Original Message ----- 

      From: Family Voices 

      To: familyvoices at inpress.pledgonline.com 

      Sent: Saturday, June 06, 2009 12:04 AM

      Subject: Re: FV: Hi Gina..re Mac and sleep

       

      Hey Maureen

       

      Have you ever tried the calcium/magnesium/vitamin D combination with Lauren? Our neuro explained that with some people/kids those night seizures keep them awake..and that as a mild anti-epileptic this might have been the reason for eli being so wakeful at night. I guess those myoclonic seizures most of us have at one time or another falling asleep makes that seem possible.

       

      I guess having had so many conversations with people about the sleep issue I am a bit cynical about the 'they just don't need much sleep' theory. This was the conclusion from the docs with eli but once he started sleeping 'normally' he developed so much faster.

       

      The other thing I notice is that often older kids with epilepsy who are on medication which worked ten years ago aren't being offered some of the newer meds...its quite expensive but when eli started taking frisium plus topamax, his sleep pattern improved again, going from 8 hours consistently to 12 hours plus, and his alertness was amazing. The results of that in terms of his cognitive ability have been brilliant. The thing is, people with epilepsy generally need more sleep, not less.

       

      I think with our kids the medical folks seem try one or two things and then stick us in the too hard basket....it has been from other parents that I've learned most of the medical knowledge I needed to make eli's life as good as it could be.

       

      Sweet dreams folks...I wish a happy sleep to everyone tonight.

       

      Jaquie J

       

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Friday, 5 June 2009 8:17 AM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi Gina..re Mac and sleep

       

      HI Jane/Gina

      Yes Mac does sound like a star and so do you both!

      I just wish I had all this support and information when Lauren was little. She will be 25 on Sunday.

      Her sleep pattern was terrible from birth. Many sleepless nights as Murdoch pushed her in the pram around the suburbs so the other children (and me) in the house could rest and get some sleep.

      It went on for years not just as a bub. She would fit all night in her sleep and I used to sit beside her so she wouldn't choke/suffocate or die. Absolutely horrible time for us.

      However, now that is not the case, what we have is a night owl. She never goes to bed before 3.30am! No matter what we do or say, she is use to staying awake long hours. She doesn't need or have allot of sleep. She has created her own monster. She realises it is anti-social and not normal to be up all night every night. But that's how it goes. She is difficult to travel with but at 25 we have to realise she has to live her own life. This all started back as a bub when she was "afraid" to go to sleep.

      At the time when she was so ill, there really wasn't anyone who could assist us, with all the sleep issues and we were very stressed.

      Good luck ladies. I think you are doing an amazing job.

      Oh, I just want to say something else. With Lauren turning 25 on Sunday. well. I never thought she'd make it and I never thought I would either.  We have both made it. I feel she has been in my life for the 60 years I have been here. I can't remember life without her, she has had such a huge impact on me. I am sure she was joined to my hip way way way back! Amazing really....(am I alone here?)

       

      Maureen

        ----- Original Message ----- 

        From: Family Voices 

        To: familyvoices at inpress.pledgonline.com 

        Sent: Friday, June 05, 2009 9:39 AM

        Subject: Re: FV: Hi Gina..re Mac and sleep

         

        Hi Gina

         

        Do you know why Mac does not sleep?  Dumb question I know but my brain only works in small steps.  Probably from old age, sleepless nights and too many red wines.  

         

        Anyway, from what I have read quickly is, if you sat or sit up with Mac he is happy and then day light comes and he sleeps is that right.?

         

        I have a bit of experience too in this area, Sarah had Sleep apnea in a big way when she was littler I don't think they called it that then but the long and short was when she went into REM her airways would collapse she would not be able to breathe the brain would tell her to wake up it then the brain told her not to go to sleep.  

        I have a fantastic Respiratory Specialist who I used to call God in those days he worked in a catholic hospital so that was big he was also very pleasing on the eye so that made the sleepless nights bearable. Ha Ha

         

        I won't go into our journey unless you think is worthwhile but more than happy if you think it could be of help.  One thing we did journey down was tonsils out at 6 months bloody terrible but I trusted the persons so I used the gut instinct and it come thru along with a whole host of other stuff.

         

        Hang in there I too think you are doing an amazing job and Mac sounds like a star.

        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: Tuesday, June 02, 2009 9:30 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Hi Gina..re Mac and sleep

         

        Jaquie

         

        Ahhh, thank you, thank you. I had forgotten about Cal/Mag sups but not sure I knew to combine with the Vit D so that is great info.  

         

        We tried on a number of occasions to get the info on them and the go ahead from Doctors but for a long time never had any willing supporters.  Eventually we did get a mag/cal combo in a powdered form which I still have in the cupboard.  We stopped when we went onto an elimination diet of sorts and I never reinstated them.    We changed his eating around so at night he has bananas, egg and porridge as there is some natural melatonin in both bananas and oats and eggs are supposedly meant to help increase tryptophan levels and subsequently increase serotonin production.  Thank you for reminding me - I will check that out with the Vit D combo information and see what regime I can implement.  

         

        We used to do a lettuce juice tube feed at night (lettuce has natural opiates) and it worked occasionally but not enough to make it an ongoing regime - more pain than gain (until I get a really great grinding juicer. still saving up for that one).

         

        The other supplement I was going to find out about was 5-HTP which is apparently a tryptophan supplement to help with that serotonin production I have seen some of the information around ADHD talk about that - don't even know if it is available in Australia as it has only come to my attention as a possible thing to investige in the last fortnight.

         

        Apparently (courtesy of some kinesiology testing by a GP in Sydney who I didn't' return to as she charges by the minute!!!) he doesn't have any food allergies or intolerances but supposedly does have sensitivities to chlorine and formaldehyde.  Chlorine isn't a problem except for summer when we go swimming as we aren't on town water.  Formaldehyde on the other hand could be a contributor as in my wisdom of better insulation in his bedroom I laid a plywood floor over the existing flooring and have a number of cupboards in his room that are Ikea varieties, both the ply and laminated cupboards would be giving off formaldehyde gasses.  

         

        We are considering moving him to a different room to see if that makes any difference - just need to decide whether I need to lift up the foam tiled rubber flooring for the same reason.  I have one friend who knows a lot more than me about plants also researching to see if there is benefit in certain varieties of indoor plants that are suitable for bedrooms that would absorb any of those chemical gasses - ha ha. as I indicated we are really getting to the pointy end of options.  Sometimes I just laugh at the options we are at they sometimes seem so totally 'out there'.

         

        Surgery might be an option down the track in a few years if we are still having issues.  We have looked at surgery options in the past but our problem to date is until he gets mouth breathing as a consistent we can't risk taking adenoids as currently they act as a shelf stopping any food getting stuck up his nose - was more of a problem when he was a projectile vom-monster than now, but there is still that issue if he gets anything blocking it he could get into real trouble.  We are reluctant to remove tonsils as they are not oversize, doesn't get any infections in them and currently they assist in providing some additional structure to the otherwise compromised physical strength of his neck.  I am fairly confident in the physical therapy we do that we will eventually get these changes to all this nasal/neck/jaw area (if I just push it along a bit more)

         

        Mac doesn't have epilepsy so not sure if there are other options to consider.  The brain injury was diffuse damage to every part so the lack of epilepsy is quite surprising, but boy, do I love being out of the grips of the neurologists!

         

        One other therapy we will consider finding out more about is the light therapy.  As I understand it you have a light with certain lumens or something that is on for set times during the day with the goal being to again stop the release of melatonin during the day - I am not sure if this would even be doable, particularly with school, so it is way down the list of options at this stage.

         

        Seemingly the benefits of sleep deprivation mean you get to research sleep deprivation quite significantly.  Mac used be such a toad that Shawn would shift to a different room, I'd put the light and tv on and prop Mac up in the corner of the bed so he could happy watch inappropriate TV shows 'glaarring' with pleasure at getting his own way yet again, and I would go and get the computer, do my work/payroll etc at 3am sitting next to Mac in bed and then poke around on the internet for any information I could find until the nocturnal child decided it was daytime and therefore an appropriate time to go to sleep - ugh.

         

        Mac is unwell at the moment with a really bad cold (might even be Boy Flu they way he has been groaning and moaning with it).  Funnily, whenever we ask him if he is getting better he feigns a 'bad cough' with a sly grin or evil glint in his eye.  Hmmm, he can have one more day off school then it's back to the grindstone for him.  

         

        Cheers

        Gina


------------------------------------------------------------------------

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Tuesday, 2 June 2009 6:38 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Hi Gina..re Mac and sleep

         

        Wow...you guys have been through a lot and worked out a heap of strategies. This kind of challenge for me is what parents miss out getting support with...most people just have no idea about the complexity of what we deal with. I hope you know how awesome you are.

         

        My experience is with Angelman...where again it seems to be a magical combination of strategies which work. There are two I can offer which you haven't listed:

         

        1.      Calcium/magnesium/vitamin d supplements. This was the magic formula for Eli to start sleeping through the night. Cal/mag do a number of things from being a mild anti-epileptic /calming factor for our nervous system, to helping tight muscles relax their tone. Given that this is a challenge for Mac it could be worth a try. See your GP for recommended doses for a little kid...it will be around 800mg Cal/400mg mag plus the appropriate amount of Vit D. These three nutrients work together and you can't absorb/make one work without the other. I'm no longer especially into 'natural' therapies...there is quite a bit of mainstream research confirming the significance of these three nutrients...and the common nature of deficiencies in them. Eli's endocrinologist said he'd like all teenagers to be on this combination, they are so important and so much bone is laid down in teen years. The data shows that where even young people have intellectual disabilities, the rates of osteoporosis are much higher, so good general practice for our kids. Having a teenager with severe osteo I can tell you it isn't a fun outsome.

        Anyway....Eli went from sleeping for about 90 minutes at a time at age 3 to sleeping 8-12 hours a night after just a few days on this combination. It doesn't help all kids, but is worth a try.

        2.      The breathing issue is one which is common in angelman too...and surgery gets the best results. This may sound extreme, but I have seen so many kids do so much better...in terms of sleep, health and cognitive function after having adenoids and/or tonsils removed. I think it is early days for Mac to be considering this, but something you might want to think about at some stage. Again...I am very anti surgery...but so many families have had such a huge improvement in quality of life where there is a significant problem. If I could have my time over, I'd have this looked at for Eli. If you wanted to email with other parents who had this surgery done on their young children I could put you in touch.

        3.      Does Mac have epilepsy? There are some other/different strategies if this is the case, perhaps.

         

        I'd love to know if any of the above could help. I think you are awesome even being up for this discussion when you are long term sleep deprived.

         

        Jaquie 

         

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Monday, 1 June 2009 7:20 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Hi Gina..re Mac and sleep

         

        Jaquie

         

        Yes please, I am always keen to hear anything on sleep.

         

        I have one other non-medication combo I think I can try that I know of, but maybe haven't exhausted all avenues after all.  Still have some music options to try, then some bed/mattress options - although beds/mattresses are the expensive things to have 'not work' so they are my last resort.

         

        There are a few reasons we think Mac doesn't sleep including any of the following:

        -        cortical vision blindness meaning he may not be getting enough daylight brain messaging to inhibit the release of melatonin during the day then there isn't a good enough supply to get him through the night

        -        same deal with the production of serotonin ie not enough to keep him asleep through the night.

        -        he is a nose breather so any nasal congestion causes him to get very stressed because he can't physically breath through his mouth without significant difficultly - we used to wonder why he coughed all night in the winter months till we worked out that was the only way he could actually breathe he had to rely on the coughing propulsion of air to allow the flow in and out since he couldn't mouth breathe (gave back our parents of the year award for that one ha ha).  As we continue to get gains in his physical structure around his nose, jaw etc I expect this to improve to allow him to return to both nose/mouth breathing like we do - just doesn't help him in the interim period.

        -        he is so incredibly tight in his muscles he turns into a pretzel and is totally uncomfortable after a sleep stint of three-four hours no matter what position you put him in.

        -        he is naughty - he cries for attention and is totally devastated until you touch or speak to him, then he grins the biggest naughtiest grin - ugh  It has improved however, he used to poke his tongue out and make himself gag and then projectile vomit for attention until we managed to remove the projectile vomiting out of his 'list of talents'.

        -        he used to get very stressed by the dark and quiet.  He used to only cope if the lights were on and the tv on - we have managed to wean him out of that by using the melatonin supplements and some white noise - now he copes pretty well regardless.

        -        He hits his peak interactive period around 8pm onwards and being selfish parents we hate missing that part of his life, we love hearing the new sounds, enjoying the increased level of alertness and awareness and interaction so we probably have let him stay up too late for too many years (although there is research to show stroke patients do their best learning in the evening hours as their bodies take longer to get certain hormones etc out of their system through the day so there may be something in that aspect considering Mac's bran injury probably has some similar components) - but mostly I think it is us wanting to enjoy him in that moment.

        -        On the nights we have used valergan he has slept all night and some nights only being rolled in the early hours of the morning but not being any more uncomfortable when he wakes up, so not sure what that tells us.  We wondered whether a memory foam mattress or a water bed could be beneficial for him.

         

        As you can see we haven't done very well narrowing the list of potential contributors down so feel free to share away.  While the sleep deprivation is debilitating for us and him, the difference in him when he has had the full night sleep albeit 'valergan' enhanced to combat his recent hayfever and sinus infections he is noticeably improved in his alertness, awareness and interactivity - he needs us to keep on trying to find answers to the sleep issue for him.

         

        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: Monday, 1 June 2009 7:03 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: FV: Hi Gina..re Mac and sleep

         

        Hi Gina, and folks

         

        I am at a conference and trying to catch up on my emails during the boring bits..so far got rid of more than 1000 of them and feeling smug!

         

        Gina, I only just finished reading your post below, and wondered if you wanted to talk about sleep. Do you know why Mac doesn't sleep? We went through the whole sleep disorder thing with Eli...angelman is notoriously difficult in terms of sleep and I might know some stuff you haven't tried/heard about...let me know if you are interested in discussing. I reckon sleep deprivation is one of the most difficult things us parents have to deal with.

         

        Jaquie J

         

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Monday, 4 May 2009 9:37 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

         

        Thanks Catherine & Meg

         

        Catherine, That is great information. thank you.  I do want all of that for every person (of course with the added benefit of it being fully accessible with built in discreet ceiling tracking, automatic wider doors & taps, Japanese style bidet toilets, fully accessible bathrooms with turning circles and lifts - so that an otherwise unlikely candidate for independence has the best shot at independence).  Mental note to self. must change Australian Building Standards when time permits.

         

        And I can see how Young Care is different to that model  but still don't know what to wish for when it comes to those too young to be in aged care facilities and who have nowhere else to go, or for those imprisoned in their homes because, through no fault of their own, true access to their community has been hard to achieve and I guess my na?ve belief in all this is that by Young Care providing a middle ground for these people they can then redevelop relationships, create friendships and then possibly choose to move on from that model.    It is a very happy shiny place in my world - I can often assume things will simply exist when they don't.

         

        BUT you might be pleased to know we have just taken a very big step for us, and only agreed to because I have taken what you have all said very seriously.

         

        We have to attend a birthday party in Wagga this weekend and while we wanted to attend the party without Mac we still wanted him over in Wagga for the rest of the weekend.  So, our friends in a nearby town (Mangoplah) are going to look after him on Saturday night.  This is huge from our perspective - we don't ask friends to babysit- mostly because Mac simply just doesn't sleep but also because he just isn't a disruptive child - he is only hard work over night so he is easy to take out and about with us.  I feel a bit of a fake as he has been a little unwell and we have had to revert to some medication for him for the first time in 5 years and the slightly pleasant side effect is that it does make him sleep a little better - at least enough that I don't feel like these friends will be expected to pull an 'all-nighter' having to sit up with him the entire night.

         

        So thank you all for giving me the courage to do this - even if it is with performance enhancing drugs and the likely significant financial cost to us in red wine when we stay with them for the next night.  I will remember to chant. "I have no guilt, this is normal & natural" whenever I feel myself slipping into that 'guilt trap'.

         

        Meg, thanks for your flippant throw away line about the 'carers report'.  I haven't even begun to read it - still rumbling with school stuff.  But thanks for the impetus for great conversation/comments.  

         

        Cheers All

         

        Gina

         


------------------------------------------------------------------------

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Monday, 4 May 2009 6:19 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

         

        Hi there, 

        Just about to switch off computer and go home, but thought I would add another two bobs worth to this thread. 

         

        This is a abstract taken from a powerpoint presentation that was given in 2007 to state funded advocacy agencies in NSW. It was part of a paper that was developed to assist advocates in their arguments against redevelopment of institutions and the introduction of so called 'innovative options' like 'villages', and 'cluster houses'. This is the difference between what you have identified Gina ie the luxury over 50's developments and what people with disability will get....

         

        Response to contemporary standards claim (2)

        Characteristics of village style accommodation for people without disabilities 

        ?       Used by a wide variety of people of all ages, gender, ethnicity and capacity

        ?       Residents have ownership or tenancy rights (They cannot be arbitrarily relocated from one unit to another or be thrown out)

        ?       They live there by choice

        ?       They can come and go as they choose

        ?       They have control over their lifestyle (what to wear, what to eat, when to go to bed etc)

        ?       They can make unquestioned risky decisions

        ?       They have control over their financial arrangements/budget

        ?       They can choose who they want to live with and be friends with

        ?       They can choose their recreational activities

        ?       They choose where, when and how they work

        ?       They can move out when they choose.

         

        (This slide is courtesy of Anne Elysee)

         

         

        Catherine

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Monday, 4 May 2009 5:49 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

         

        Thanks Libby

        I am happy to read anything anyone has to say.  As I said in my post this is an area I get very confused about and am trying to understand more about it.  Points I raise aren't necessarily something I would choose to do but I want to make sure I understand motivations behind choices people make to ensure I don't deny anyone their choices (provided as Anita says they are made after being fully aware of the issues).  And therefore they are things I want to see discussed and I will never get offended by anything anyone has to say.  

         

        I also know I don't have a really good grasp of the variety of living arrangement people choose.  For example, there has been the recent increase in luxury housing developments for the over 50s - I assume from that there must be a market and therefore from that I must accept that some people like living in that type of community where there is less age diversity.  I live on the family farm - there are three families on our farm - my sister's family and my parents and us, the adjoining 3 farms are all my aunts, uncles, cousins etc where there are 7 families.  My son, Mac is sixth generation on this property - so I am mindful we have a pretty safe haven at this stage of our lives and am aware I need to understand more about why people choose to live where and how they do and also be sure that just because this is my safe haven it could be very isolating for Mac if we aren't smart about his options for the future.

         

        Please keep any conversations and insights around this issue going - I love it all and appreciate all everyone has to say.

         

        Cheers

        Gina


------------------------------------------------------------------------

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Monday, 4 May 2009 4:30 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Reciprocal visit and inclusion movement - Meg

         

        It's interesting this thread. I wanted to comment on families being too exhausted to fight for anything more than their survival, and this makes the possibility of institutions coming back more likely. However the conversation seems to have moved on real fast!!! It's great really. Gina's post I think could do with some discussion - so I'll ponder on what she has said and perhaps post again.

         

        Anywho

         

        It's interesting in my work, I find that families get really energised (despite their hectic, exhausting etc etc lives) when they are working on things that are actually exciting, will bring meaning to their children's lives and are life-giving or life-affirming (in Kendrick's words). So people can find energy or can re-gain energy when the work is actually energising. In my work it has been interesting to see what parents get energised about. They are things like

         

         - all the work it takes to get their kid to be involved in a youth group. This involves meetings, training, writing information, liaising with leaders and assistants. It has now expanded with this parent interested in talking to schools and other youth centres about how they can get involved

         - assisting their son/daughter get a real job. From total depression about their son being out of work since school - passivity when we first met, given up, not knowing what to do. We found an opportunity and then it was "what can I do to assist here?". 

         - wanting to connect to other families interested in governing and running their own supports.

         - working on valued roles in general

         - teaching others. Speaking at conferences and lectures and assisting others to learn.

         

        and so on

         

        I think what I'm saying is that

         - we should assume that even exhausted people can find energy to work on things they are truly energised about. It's up to us to ask the question of what would energise, excite and interest them? This moves from buying into the passivity discourse and actually doing something about it. By doing this we are then tackling the re-emergence of institutionalisation head on.

         - we can structure things so that this actually happens. The system that makes these exhausted people can also unmake them with some different questions and different approaches.

         

        All the endless meetings about 'lack of respite' and 'carers burden' and 'no money in the system', 'unmet need' etc etc. These are important political issues but can also serve to make people victims and instill inertia. 

         

        Libby 

         


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From familyvoices at inpress.pledgonline.com  Mon Jun  8 02:03:32 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 08 Jun 2009 19:03:32 +1000
Subject: FV: Links
Message-ID: <4A2CD3E4.3000807@internode.on.net>

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From familyvoices at inpress.pledgonline.com  Mon Jun  8 02:13:12 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 08 Jun 2009 19:13:12 +1000
Subject: FV: Links - Self directed Funding
In-Reply-To: <4A2CD3E4.3000807@internode.on.net>
References: <4A2CD3E4.3000807@internode.on.net>
Message-ID: <4A2CD628.2060904@internode.on.net>

Found these two links in a mag recently and thought some people may be 
interest (if you do not already know of them).

They are:
www.in-control.org.au
On there site they say "In Control Australia is a group of individuals 
and organisations who aim to bring about systemic policy change in 
Australia to enable individuals with disability and their families to 
self manage their support."

http://www.cnet.ngo.net.au/images/stories/05_personalising_service_delivery.pdf
This is a discussion paper titled "Personalising Service Delivery - A 
Discussion Paper by the NSW Liberals/Nationals"

Todd.






Family Voices wrote:
> I came across a couple of links and thought some people might be 
> interested in them. So I thought it might be good to keep just a links 
> thread where people can post links that may be relevant or of interest 
> without to much discussion in the body of the email. If people want to 
> create a discussion about anything in the links then just do what we 
> are doing now and create a new discussion by naming that topic in the 
> subject line as opposed to replying to the specific link email. Hope 
> that makes sense.
>
> So to add a link I think the way we would go about it is to reply to 
> the email "Links" and tack on in the subject line what the link 
> relates to eg:
>
>     * Links /(main links thread)/
>           o Links - Self-Directed Funding
>
> Now I will give it a go and see if it works.
>
> Hi to all, Todd.
>
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From familyvoices at inpress.pledgonline.com  Mon Jun  8 04:21:47 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 8 Jun 2009 19:21:47 +0800
Subject: FV: Links-well done Todd!
In-Reply-To: <4A2CD3E4.3000807@internode.on.net>
References: <4A2CD3E4.3000807@internode.on.net>
Message-ID: <000e01c9e82b$5057aa10$f106fe30$@com>

 

The ever organized one.

Well done!

Hoping you are well.

Darrell

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 8 June 2009 5:04 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Links

 

I came across a couple of links and thought some people might be interested
in them. So I thought it might be good to keep just a links thread where
people can post links that may be relevant or of interest without to much
discussion in the body of the email. If people want to create a discussion
about anything in the links then just do what we are doing now and create a
new discussion by naming that topic in the subject line as opposed to
replying to the specific link email. Hope that makes sense.

So to add a link I think the way we would go about it is to reply to the
email "Links" and tack on in the subject line what the link relates to eg:

.         Links (main links thread)

o    Links - Self-Directed Funding

Now I will give it a go and see if it works.

Hi to all, Todd.



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database 4136 (20090606) __________

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From familyvoices at inpress.pledgonline.com  Thu Jun 11 15:24:34 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 12 Jun 2009 08:24:34 +1000
Subject: FV: techno information
In-Reply-To: <7sroog$bnqo07@ipmail05.adl2.internode.on.net>
References: <55F2F2E5867848349F430013C155CA68@dell91>
	<7sroog$bnqo07@ipmail05.adl2.internode.on.net>
Message-ID: <3C0DD76116054509B338113903BEF59B@dell91>

Hi FVs

Does anyone know if you can link your iphone/ipod to any computer to charge?

And or can you get into your itune account off any computer.

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: Monday, June 01, 2009 6:45 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: techno information

HI Jane
I will have a fiddle with ours to see what we are doing differently and if I
can work anything out.

We have Shawn's computer set up for his, Mac's, Cousin Alex, Cousin Lucy and
Friend Jordan's ipods but think at the moment we get everyone's music on all
of them unless we pick and choose specific playlists to sync.

Maybe it needs to be done as a manual copy of playlists rather than a sync -
I'll get back to you.
Gina


-----Original Message-----
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: techno information


Hello all

Can anyone tell me how I download off two itunes sites?  I have registered
Sarah's ipod (I think) to a I tunes site and my son has a itunes as well.
When I go to his and download his music it wipes out the stuff I have set up
on other.

Still haven't worked out proloque2go program.

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: Saturday, May 30, 2009 4:05 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Facilitated communicaton

It would do this and sort them but you have to change the header
(subject) of each positing to keep the thread the same.

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Friday, 29 May 2009 7:35 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Facilitated communicaton

 

Hi all

 

Brenda I have just come in have not really caught up with the thread but
am also interested in the conversations re FC.  I have to go away this
weekend, away from family voices  I am now printing off madly to show
some of the wonderful words of wisdom.

 

Right now I have a bit of headache so bit fuzzy but I have a thought in
my head that we are not tracking the conversations so well.  Is there
anyone out there with out a fuzzy head who can think of a simple way to
have threads in line???

Gina I have done the rule thing which is great another thing you have
taught me but could we do something like that with subjects of
conversations.

 

Family voices is one of the most powerful things in my world at the
moment, the sharing, knowledge, understanding is priceless.

Hug to all

 

Ps Hearing what you are saying Meg.  Was the house offer your new one or
old one.  Keep riding that rollercoaster girlfriend and hang on!!!

 

Jane Warner/Hudson

 

07 46714737

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Thursday, May 28, 2009 11:26 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

Hallo everyone,

 

I am a parent of a son who had a head injury many years ago and did not
come up through the child raising times and so I find your conversation
very enlightening.  I now have a problem. I am travelling in Canada,
using other people's computers, and wanted to forward the conversations
about Facilitated Communication to someone I met this week. However,
somehow I lost it. Would someone please forward those particular
conversations to me again so that I may send them on to her.

 

Regards,

 

Brenda

On Wed, May 27, 2009 at 8:10 PM, Family Voices
<familyvoices at inpress.pledgonline.com> wrote:

Another aspect of this we have faced is the absolutely IMPLICIT
'dependence learning' that is done through the very act of having
support workers. This is so deep in Matthew, and I feel quite certain at
this stage that this is an inherent aspect of the 'support worker'
model. Matthew turns to the person he is with and puts his hand to his
mouth (a morph of the drink/eat sign). This sign is a decision-making
sign and one that he initiates. It's fabulous that he initiates it
(decision-making in practice) but it quickly becomes a handing-over of
power (that he also initiates). It's also the fact that he does it in
the first place. Depending on the context, it variously means

 

 - tell me what is happening next

 - where are we going

 - I want something

 - who is coming after you bugger off (and are they going to be more
exciting that you my boring sister?!)

 

As you can see, depending on how you respond you can very easily become
the locus of control.

 

Why doesn't Matthew make a decision  - eg I want a drink - a go initiate
it? He's capable of this with assistance (this was meant as a
rhetorical/theoretical question). Instead he's learned so subtely and
powerfully over the years that the people who come in to his home are
responsible for this.

 

I'm using this as an example, not really looking for suggestions here
about others ways Matthew could communicate - we're really working on
this.

 

I think what I wanted to raise are actually issues around involvement of
paid people/unpaid people - I have seen this as another topic of
discussion here

 

So much of what families/individuals are conditioned around is the need
for paid support. Families (including ours), leap to it. However we
baulk (including ours), are fearful, worried, don't think it could be
possible etc around the unpaid stuff. We're taught (professional gift
model) that this is what is needed. I look at the self-managed community
participation options in NSW for example, where the work of families
seems very quickly to be around hiring support workers to assist the
young person in their post-school pursuits. It becomes like a vicious
cycle - the more we get caught up in managing the paid system the easier
it is to stay away from the (harder) work of the unpaid stuff. 

 

I have found in our accommodation agreement/arrangement with Matthew's
service provider that we too get driven by this. His budget is there to
use to hire support workers isn't it? 

 

It was therefore very interesting to hear Bruce Uditsky from Alberta,
Canada talk at Family Advocacy conference a couple of years ago about
this - their response has been to work on a number of projects that seek
to systemically develop more natural supports. For example their
partnership with Rotary where support on the job is built through
co-workers.

 

My example above is to talk about the potentially powerful impact of
this on people and their decision-making capacity. There are many things
we can do to help put power back into Matthew's hands, but many of these
are really just fiddling, cos they don't get at the root, which is the
very presence of the person whose job it is 'to help' (no matter how
empowering they are in the practice of this role).

 

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices

Sent: Wednesday, 27 May 2009 9:51 PM 


To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

The response we are accustomed to is "I don't know" when she absolutely
does know.  I think this comes from a place of wanting to please, not
wanting to be to told no and also wanting to get the answer right.
Depending on the complexity of the question we now give her ridiculous
options like cat food on toast to push her to articulate her choice or
reframing the question/breaking it down in sequential order to assist
understanding and then decision making.  We are also very aware that if
Jos makes a clear choice that we honor that (as much as we can,
education about good food choices or bed times if very tired etc) even
if it really puts us out otherwise her choice making is really
redundant, leading to more I don't know.  The other aspect is that we
know her well and understand her reluctance to make decisions however if
she were in a service world it would simply move on and make decisions
on her behalf that suited the service not her as a person.  We are
really keen to encourage her independent decision making as she will
need it in the future to maintain her personal independence and protect
her form being, excuse me, fucked around.  It's interesting that what is
a big ask for Jos would be just a natural occurrence for the other kids.
Todd and I are the moderators of this and we try to always be mindful
that our power over her life is much more profound in good ways and also
in not so good if were not careful to keep her interests at the
forefront of our minds.

 

Megs

 

Offer on house accepted, meeting with new school held.still thinking,
geriatric dog survived kennel experience (just), eldest child home from
England tomorrow, middle child has new work placement at child care
centre, youngest child 15 on Friday, just like everyone else ...busy,
and it's now winter YUCK !!!!!

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Tuesday, 26 May 2009 9:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

This is all so true...we all fill in the gaps of what we hear with our
own assumptions. We have a terrific service dude here in Perth who works
with the vela families who always reminds us that everyone's default
answer is always 'no'...until we have enough information.

 

One of eli's friends years ago used to routinely refuse to sleepover. I
assumed, in my wounded heart maternal fashion, for about a year that he
said no because he didn't really want to be around eli that much because
he was too weird. When i got around to asking him, he said...i'm
planning to live with eli when i move out of home but i don't think i am
ready to look after him all by myself yet. This young man was 13`at the
time, and for some reason he had assumed that a sleepover meant me and
Darryl wouldn't be here! We've had many sleepovers since and even now, 4
years later, some. Weekends liam almost lives here.

 

One strategy we've been using with one family is to build up an image of
adult life using favourite movies and tv shows. We have a young woman at
present with some challenges around adult behaviour, and are using her
favourite tv series 'Friends' to help her to identify adult vs childish
ways of being. So far it has been very successful. I think this process
of developing an adult identity is comlex for all of us.

 

We've had some awesome help with this from the international men's group
Mankind Project who eli is in the process of joining. I recommend them
from what i have seen so far to anyone with sons who are transitioning
into an adult male identity, but they have been profound and magnificent
in their welcome and inclusion of eli so far. Check out the website:

 

http://www.mkp.org/ 

 

Jaquie

 

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:31 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

 

That's really interesting Jill and has really made me think! Quite a
ground breaking thing - so simple yet so easily missed. This has really
made me think about my language and how we assume so much in our
conversations in life

 

Libby 

_________________________________

 

 

________________________________

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:49 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?

Hi Jill, Interesting that the wording was the hold back. I did ask
Lauren if she was lonely and was our home too big for her to manage. But
she just looked at me vaguely and said no. Maybe I should word it
differently. I don't want her to feel she HAS to move away from her
security either. It might take years for us to get to a place where she
lives independently of us, but I feel we have started her thinking she
can do it.

When are you going to South America Jill?

Maureen

	----- Original Message ----- 

	From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com>  

	To: familyvoices at inpress.pledgonline.com 

	Sent: Monday, May 25, 2009 11:37 AM

	Subject: Re: FV: What is inclusion?

	 

	Hi Maureen 

	Great news about Lauren's 'holiday'!  I can relate to it so well
as it was the same for me with Ben when I returned from Canada.    Apart
from his solo experience whilst I was in Canada, I eventually worked out
what was adding to his concern re living independently.  I used to say
to him "wouldn't you like to live by yourself?" or something similar and
just lately twigged that he was taking this literally and thinking that
he would be just in the house by himself with nothing else happening!
When I thought to add that he would still go to work, go out with
friends, visit me etc, his whole attitude changed.  Silly me, thought he
was a mind reader!  Ben has now agreed to having a look at some places
for himself, so we will gradually do some open inspections.  More
holidays on the horizon for you!

	Regards

	Jill

	 

	 

	Hello everyone,

	Life has been busy here and I have been reading all the
contributions and not participating. Just reading..

	"Moving Mum"can be as stressful as thinking about moving our
young ones into places of their own. As I have a 91 y.o. Mum who lives
in an retirement apartment and is very independent, but she can't drive
or attend medical appointments without some assistance and so I (and
others) are always there for her. We are a huge family, and we love
sharing the responsibility of Mum, but for others like Anita, who are
"IT" - the problems can't be shared - there is a huge responsibility.

	There is such a close parallel between disability and aged care.
I often see the same issues arise between Mum and Lauren. Age is not the
barrier!

	 

	My good story for the day is..

	Murdoch and I went to Hobart for three nights of respite and
golf.. We ate too much and drank too much and went to the casino and the
horse track and generally enjoyed ourselves.

	All this was possible because we "bit the bullet"and left Lauren
at home - ALONE!!

	I had prepared a few meals in advance. She ordered a Pizza to
share with a friend who came over and stayed on Saturday night. They
took themselves out to brunch on Sunday morning and she managed her life
and recreation very well without us.. We are delighted to tell you we
are

	very excited about her independence, but more so, she was so
delighted to see us!!

	 

	Aren't we lucky? To be greeted so lovingly and warmly when we
drove in the garage and her little laughing face was at the door. My
other kids never greet me so welcomingly! She really loves us..That is
so nice. It is so evident even though she just can't bring herself to
mouth the words"I love you Mum and Dad"- We have blessed evidence and
that is so nice for us!

	 

	I hope you are all well

	Maureen

	 

		----- Original Message -----

		From: Family Voices
<mailto:familyvoices at inpress.pledgonline.com> 

		To: familyvoices at inpress.pledgonline.com

		Sent: Sunday, May 24, 2009 8:13 PM

		Subject: Re: FV: What is inclusion?

		 

		Thanks Jaquie . . . I appreciate your thoughts  - I'm
off on a holiday for two weeks so hopefully I'll come back with a
peaceful and clearer mind!

		 

		Cheers!

		J

		Anita O'Brien

		6 Bogong Court

		Doncaster East 3109

		Ph: 03 9841 8492

		Mobile: 0416 064 045

		email: anita.obrien at optusnet.com.au
<mailto:anita.obrien at optusnet.com.au> 

			-----Original Message-----
			From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
			Sent: Sunday, 24 May 2009 5:28 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hey Anita

			I just went through this myself.

			I don't really have any sage advice, other than
to say that the microboard model has been extended in North America to
successfully cover situations like this one..ie so folks can be
supported at home. That probably doesn't help you directly as the model
is still so much in development, but is there a way you could use the
circle of friends idea to provide support to your mum in the new
location....these issues we face with our kids are the same we all face
at the times we most need support. Even if your mum needs to live in the
ILU or somewhere with more supported, person centred planning can still
help to make the service provision and her life as close as possible to
what she wants and needs. Also Essential Lifestyle Planning is really
good in this situation.

			I feel for you....it seems a cruel thing that us
parents seem to commonly have to deal with our kids and our parents
transitions at the same time.

			Let me know when you have downloaded Skype!

			Jaquie

			From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
			Sent: Thursday, 21 May 2009 2:29 PM
			To: familyvoices at inpress.pledgonline.com
			Subject: Re: FV: What is inclusion?

			Hi everyone,

			Loved the Kathie Snow statement AnitaS!

			Great story about Dan & Jack, Jo, of what can
happen out there in the community, how Dan was the connector!  These
experiences do keep you going.

			Inclusion for the elderly - don't always want
it.

			I have been spending much time caring for my
88-yr old mother in law, who has shifted unwillingly to an independent
living unit in a retirement village.  She needs quite a lot of support
and we have some in place, but she really needs hostel care or nursing
home.  We tried to make the transition easier for her from home to ILU.
It would have been great for her to stay in her own home and we have
been supporting her to do so for nine years plus, but her vulnerability
is such that we had no choice.     Quite a few people she knows in the
village but up to now she doesn't seem to want to mingle anymore than
she has to.  This situation seems to go against all I believe and work
towards for Warren;  Her choice would be her family home - & hide away.
On top of this we have had a mountain of cleaning up to do to get her
house ready for sale.  If anyone has some sage advice I'm happy to
listen.  

			Thinking about getting on Skype myself - let you
know how I go Jo.

			Warm wishes to everyone!

			xo

			AnitaO

				-----Original Message-----
				From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
				Sent: Wednesday, 20 May 2009 10:51 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Wow, I'm worn out thinking about all
that travelling - I hope it'll be for a few weeks.  Yes, it is a small
world and what a great opportunity to catch up with Bruce to maybe get
his reflections.  Go Girl - congratulations Rachel on getting the gig -
I looove Rock n Roll (am I on the right track). 

				I'll get dad to run a copy of the DVD
for you (are you reading this dad?) - not a heap on it but enough to
enjoy and bring back those memories.

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Wednesday, 20 May 2009 7:05 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hello Jo Good to hear you and remember
our time at the Ho Down and of course other moments, How did the film
come out. It would be good to see.
				We are off to Dublin in August and now
not only will Rachel  present a paper she is  being invited to be part
of the demonstration Rock and Roll team. Rather her than me but she
seems happy with the task. there are nine other from the Down Syndrome
group who have been involved for a long time so she has a bit of work to
do. Still they seemed keen to have her after they asked her to go for a
audition. She will also be performing in her two woman show in London so
she is going to be busy. I am looking forward to catching up with
Bridget as she son will both be there, Actually it will be great because
I see from the program that Bruce will also be attending. We might just
have our own little meeting and hear from him how he thought our visit
went. It is a small world really isn't it. We will spend some time with
my sister and her family england and then go to South Africa on the way
home to see my Brothers family.
				You take care Miriam

				
________________________________


				To: familyvoices at inpress.pledgonline.com
				Date: Wed, 20 May 2009 08:10:02 +0800
				From:
familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Thanks Miriam, it's lovely to hear from
you.  When are you off on your trip - must be coming up fast now.  Hope
all is well with you and the family,

				Love Jo

				From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
				Sent: Monday, 18 May 2009 7:46 PM
				To: familyvoices at inpress.pledgonline.com
				Subject: Re: FV: What is inclusion?

				Hi Jo I loved your happy weekend story.
and the glimpse of you in your home. I hope the education stuff gets
better for you, sadly it is such a long hard journey. You take care my
warmest wishes  Miriam 
				 
				> To:
familyvoices at inpress.pledgonline.com
				> Date: Sun, 17 May 2009 18:48:14 +0800
				> From:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Everyone, 
				> 
				> It is 5pm West Aussie time and I have
been sitting here with a loooovely
				> glass of Cab/Sav catching up on the
conversation on FV learning from one of
				> my favourite sources. 
				> 
				> I am feeling pleasantly tired after
being away to a Velor Microboard Weekend
				> at Fairbridge (just north of Pinjarra)
with another amazing group of people
				> from all over the state learning more
about inclusion and how to invite
				> others to be an integral part of our
sons life. While I was learning this
				> stuff Dan was out having fun on the
flying fox, abseiling, bush walking etc
				> supported by new friends.....
				> 
				> Would like to share this story from
the weekend, Dan and a young man, Jack
				> connected with one another on
Saturday, I only discovered the connection
				> this morning when Jack walked by at
breakfast and I saw Dan's arm shoot up
				> to give him a 'high five', Jack
stopped, said good morning, how are you
				> mate, had a bit more of a chat and
went off to have brekky. The abseiling
				> was happening after breakfast and
after some discussion with the Coordinator
				> she approached Jack to ask if he would
take Dan abseiling which he readily
				> agreed to. When lunch time came
around, Dan arrived back at the hall with
				> Steve, minus Jack - I was wondering if
everything went ok and decided to
				> follow up with him when I could. 15
minutes later he came in and sat down,
				> I thanked him for helping Dan out and
he said "it's me that will be thanking
				> Dan", he explained that he had never
abseiled before so prior to taking Dan
				> up he did a dummy run on his own, then
he went up and down with Dan. After
				> everyone had had their turn the
instructor offered Jack a weekend job, Jack
				> said he didn't know much about
abseiling and the response was "if you can
				> support someone the way you did with
Dan, talking to him all the way up and
				> down, helping him out where he needed,
you know everything you need to
				> know". Jack was stoked (he's 16) and I
was in awe of him being so
				> appreciative of Dan who helped him get
the job. One day I'll stop being
				> surprised but right now I still get
caught out with how there are others who
				> are so appreciative of our kids. Just
wanted to share a warm and fuzzy -
				> they help me keep going with the other
hard slog stuff we have to face -
				> thank goodness for these little gems.
				> 
				> I have some education stuff happening
(negative) but don't want to go into
				> it just now after my enjoyable weekend
so will ask for some comments at
				> another time when I'm ready to tackle
it.......wish it could be never!
				> Jo
				> 
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, 17 May 2009 2:39 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> HI Gina
				> Just been skyping with Anita. Wow is
that scary I think the rule should be
				> only head for camera.
				> 
				> I have also just gone to itunes and
downloaded away the podcasts?? What are
				> they?
				> 
				> Is anyone interested in skypeing?
				> Cheers Jane
				> 
				> 
				> Jane Warner/Hudson
				> 
				> 07 46714737
				> 
				> 
				> -----Original Message-----
				> From:
familyvoices-bounces at inpress.pledgonline.com
				>
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
				> Voices
				> Sent: Sunday, May 17, 2009 1:32 PM
				> To:
familyvoices at inpress.pledgonline.com
				> Subject: Re: FV: What is inclusion?
				> 
				> Hi Jane
				> 
				> Bearing in mind I haven't got P2Go at
this stage but this is only as I
				> understand it...
				> 
				> Q/ With the prolquo when I go into
"about me" Can I put in stuff where
				> it
				> says "I go to the .....school?" ie
Goondiwindi. If it is yes I will
				> then
				> work out how, I just don't want to be
trying to work something out that
				> I
				> cant do.
				> 
				> I believe you can add in your own
words etc, you might have to fiddle
				> with the spelling, punctuation etc of
Goondawindi to get the voice to
				> say it well enough for you to be happy
with, ie it might need some
				> phonetic spelling, hyphens etc to work
it out. In time you will work
				> out how to spell things to have the
'real voice' pronounce it well
				> enough.
				> 
				> Q/Which manual or directions do you
think are the simplest for
				> programming?
				> 
				> Have you joined the P2Go group - there
are some great parents who have
				> been beta testing it on that group and
they are very keen to help out.
				> I posted the link a while back, but
can resend if you need it. These
				> are people actually using it for their
kids now, so would be great to
				> post your specific questions to them.
The developers are very hands on
				> too.
				> 
				> 
				> Q/ Do you think it would be worth my
while to get a Iphone for me? (I
				> saw
				> one on ebay that looked ok), Sarah
have the Ipod so that I can learn to
				> use
				> it while she is. At some stage I would
like her to use the phone just
				> not
				> sure if this is the right tool. Ie my
thought for her was maybe a phone
				> with video connection to me so she can
learn mum rings, I see her face
				> and
				> from their we learn answering and talk
back.
				> 
				> We haven't got the iPhone yet, but
this was our plan... Shawn is off
				> contract with his phone at the moment
having changed jobs and now for
				> the first time in his working career
not provided a phone (shame about
				> that). So he was going to lock into a
$49 or $59 capped plan to curb
				> his costs each month. Optus are
currently offering iPhone plans with a
				> 8gig phone at this price so we believe
we could sign up to one of those
				> plans, bring his number across to that
plan, then move the sim card to
				> his Samsung phone an then just use the
iPhone for Mac without a sim card
				> (or buy a cheap prepaid plan if we
felt it was good as an emergency
				> phone). At least that way I could
start developing options for its use,
				> start storing things I would normally
store on a stepped switch
				> communicator and so on.
				> 
				> I still need to find a way to switch
adapt it, no-one has worked that
				> out yet - but I will keep trying. 
				> 
				> You would just have to check out the
costs/capabilities of video calls
				> if that was a goal - I don't know much
about that. Maybe skype is
				> available to use via the internet
connections rather than phone calls -
				> not sure on that one.
				> 
				> 
				> In saying all this she is very good
with the ipod I put hi five and
				> wiggles
				> on yesterday and it is a hit.
				> 
				> There are also some great free PIXAR
short films on iTunes you can
				> download - Mac loves them. Also check
out the podcasts that are out
				> there. We found heaps of stories for
Mac on podcasts (all free). Mac
				> has a very eclectic selection on his
ipod. Jason Mraz is a big hit, he
				> likes to sing along, but he also likes
some albums called 'Little
				> Voices' which is kids singing more
contemporary and classic songs. He
				> seems to have ended his Tom Jones
phase (now that the 'beer ad' is off
				> tv), still partial to some Kiss from
time to time. He is a funny kid
				> really - he would be happy to have
some big political speeches on there,
				> loves a big political statement on the
news, he readily 'glaarrs' along
				> with the speaker - we are not sure
whether he is 'for or agin' Mr Rudd
				> yet, but he certainly pipes up
everytime Kevvy is banging on about stuff
				> on tv or radio.
				> 
				> I am also going to see what I can
learn about the Database program Bento
				> which can be used on the iPhone and
see if a PODD style system could be
				> converted into that format. Just
trying to find some workshops on PODD
				> systems somewhere in the country at
the moment so I can learn more.
				> 
				> Sorry more questions, where is the
best place to get easy step by step
				> instructions to use ipod ie move
programs on front page.
				> 
				> Check out their website at
http://www.proloquo2go.com/
				> <http://www.proloquo2go.com/> 
				> 
				> 
				> Can I download a dvd to ipod direct or
does everything have to go thru
				> itunes?
				> 
				> I think you can just convert a DVD
into ipod formats - there would be
				> software to do that depending on
whether you are on PC or Mac. Some
				> might be freeware, some cheap, some
expensive. Again, since I haven't
				> got the touch yet I can't be sure. 
				> 
				> Thanks Gina. You are such a
inspirtation, I would love to get you to do
				> a
				> workshop for want of a better word in
Goondiwindi. The young families I
				> work with could learn so much from
you.
				> Anytime :-)
				> 
				> Just a thought which I am sure you
have covered, when you talk with the
				> school do you have someone beside you?
> 
				> I have my husband sitting beside me
for all these meetings. I would not
				> go in there alone for love nor money.
We sometimes don't think it is
				> fair on those we meet with. Shawn and
I have been together now for 21
				> years and know exactly where one
another sits on issues so we can play
				> the "good cop/bad cop" roles pretty
well, and where we know it is
				> unfair, is that we switch mid meeting
if it is needed. Because Shawn
				> has been doing so much study on
disability representation in the Media
				> etc he is great because he can just
spout stuff, but also because he is
				> a journalist he is trained to
question, so he turns their questions
				> round back at them - so we know we
don't really play fair. We also don'
				> t go in for all the 'guilt' stuff we
are meant to - guilt is soooo
				> over-rated :-). For example there are
kids at the school who have been
				> denied access to other schools because
they have 'behavioural and/or
				> emotional type issues' (I know,
shouldn't happen, shouldn't be denied
				> access anywhere, but it does) so our
school does take them with open
				> arms, but these families are then
sooooo grateful their kid has been
				> accepted they are not going to risk
making waves and subsequently they
				> have been forced into this position of
having to feel grateful and/or
				> disempowered by the system. So, when
you don't do the guilt thing, I
				> guess it becomes a bit confronting for
'the system'.
				> 
				> Hope it helps
				> 
				> Feel free to contact me anytime if you
think I can be useful. Mac's
				> birthday is in June - he might get his
iPhone then. So excessive
				> providing such a thing to a 6yo but I
honestly think it has the
				> potential to be such a fab tool for
him I will just have to cope with
				> being an over indulgent parent (guilt
free of course).
				> 
				> Gina
				> 
				> 
				> 
				> ________________________________
				> 
				> I am using the Free version of
SPAMfighter
				> <http://www.spamfighter.com/len> .
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fighting spam.
				> SPAMfighter has removed 1588 of my
spam emails to date.
				> The Professional version does not have
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				> 
				> 
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				> Checked by AVG - www.avg.com
<http://www.avg.com/>  
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				> 
				> 
				>

				
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From familyvoices at inpress.pledgonline.com  Fri Jun 12 14:46:35 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 13 Jun 2009 07:46:35 +1000
Subject: FV: techno information
In-Reply-To: <3C0DD76116054509B338113903BEF59B@dell91>
References: <55F2F2E5867848349F430013C155CA68@dell91>	<7sroog$bnqo07@ipmail05.adl2.internode.on.net>
	<3C0DD76116054509B338113903BEF59B@dell91>
Message-ID: <4A32CCBB.7070207@internode.on.net>

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From familyvoices at inpress.pledgonline.com  Sat Jun 13 18:10:46 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sun, 14 Jun 2009 09:10:46 +0800
Subject: FV: Hi from Jo
Message-ID: <000601c9ec8c$f2aa1860$d7fe4920$@net.au>

Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay.  

Jo

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From familyvoices at inpress.pledgonline.com  Sat Jun 13 22:49:29 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sun, 14 Jun 2009 15:19:29 +0930
Subject: FV: Hi from Jo
In-Reply-To: <000601c9ec8c$f2aa1860$d7fe4920$@net.au>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au>
Message-ID: <B5A2C54B-97E6-4878-BD58-D8891ACABEB4@aapt.net.au>

Hi Jo
Great to hear your fantastic news - it's so heartening that such great  
things are happening.
I hope you have had time to take a breath, remind yourself of all the  
hard work you have have done, take the credit and enjoy the rewards  
and the moment!  The nervousness of having new people entering Dan's  
life -  the trust/hope/confidence factor is HUGE!!    Finding that  
balance of stepping back but being there is always so hard.  I hope  
the meeting goes well on Wednesday.
Regards
Jill


> Hi There Everyone,
>
> Just an update from the Nunn household and keeping in touch.
>
> You may remember me hinting at some Education stuff I wasn?t looking  
> forward to tackling ? well last week was the week that we had the  
> meeting.  In WA we are allowed to apply for a 13th year for our  
> children to attend school, we had decided we wanted Daniel to attend  
> an additional year if possible.  Problem was our principal we had a  
> good relationship with and who I know would have supported us moved  
> on in 3rd term 2008.  The acting principal was the deputy who  
> immediately set about trying to get Daniel out of the school at the  
> end of last year ? we won that one and he returned to the school  
> this year.  Anyhow, anyhow, anyhow, the new principal came on board  
> this term and I was convinced that the deputy (who was the acting  
> principal) would have had a major influence in whether or not Dan  
> could do a 13th year and I was feeling that we wouldn?t get a  
> hearing as to why we felt the need for Dan to continue on for the  
> additional year.  However, off we trot, put our case forward ? he  
> says ?do you want the short answer or the long answer?, I sometimes  
> just don?t know when to keep my mouth shut so add a few more points  
> ? really just repeating what I?d already said, when I finally stop  
> he says ?yes?, well, I?m gobsmacked and say in the most intelligent  
> way ?what?, he then say?s ?there is a condition? ( so, I am thinking  
> this was just too easy) when he adds ?his behaviour will have to  
> improve, I agree and say ?place him on a Management Behaviour  
> Program? (laughing) and he says ? it?s not good when Frank (Dan?s  
> Aide) is asking him to go into class and Daniel is bolting out of  
> the school gates and that has to change?.  I swear if you weren?t  
> listening carefully you would have thought he was serious.  He then  
> tells me he?s put all the paper work through and it?s been approved  
> by the education department.  We are still feeling a bit shocked and  
> stunned but absolutely thrilled with the outcome.
>
> Another nice story, we have been trying to get Daniel into a Work  
> Placement with no luck to date.  One of the things we have been  
> thinking about is him supporting a teacher in a school and thought  
> his old school would be the place to start as we still know quite a  
> few people working there.  The Coordinator phoned me last week to  
> let me know he?s been given a position with his old year 7 teacher  
> to work as an aide beginning next week.  If will be for 5 weeks with  
> a possibility of it continuing.  This type of job fits so well with  
> Daniel and his personality so am very much hoping it will be  
> successful.
>
> On Wednesday night we will be having Dan?s first Microboard Meeting  
> so feeling a tad nervous, there?s something about inviting people  
> into our lives that leaves us feeling a bit vulnerable ? will they  
> come, if they do will they want to be a part of supporting Dan to  
> continue being included in our community, will they walk the talk!!   
> I want to change the pinwheel model in that it?s me at the centre  
> organising everything to something that looks much messier with lots  
> of people organising stuff around Dan ? does that make sense?  I  
> will soon find out if it?s realistic to achieve and if so will be so  
> much better for Dan and me.
>
> I hope everyone is well and keeping the flu?s at bay.
> Jo

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From familyvoices at inpress.pledgonline.com  Sun Jun 14 04:19:29 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sun, 14 Jun 2009 21:19:29 +1000
Subject: FV: Hi from Jo
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au>
	<B5A2C54B-97E6-4878-BD58-D8891ACABEB4@aapt.net.au>
Message-ID: <1F90C065D5084246A5AA371517023086@D8XYGK1S>

Good stuff Jo.
All the worry and hard work and planning has paid off for you and Dan. Good luck for Wednesday and your meeting. I hope it goes well. Surrounding Dan with caring people in his life sounds like a very positive step.  Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Sunday, June 14, 2009 3:49 PM
  Subject: Re: FV: Hi from Jo


  Hi Jo

  Great to hear your fantastic news - it's so heartening that such great things are happening.

  I hope you have had time to take a breath, remind yourself of all the hard work you have have done, take the credit and enjoy the rewards and the moment!  The nervousness of having new people entering Dan's life -  the trust/hope/confidence factor is HUGE!!    Finding that balance of stepping back but being there is always so hard.  I hope the meeting goes well on Wednesday.
  Regards
  Jill




    Hi There Everyone,

    Just an update from the Nunn household and keeping in touch.

    You may remember me hinting at some Education stuff I wasn?t looking forward to tackling ? well last week was the week that we had the meeting.  In WA we are allowed to apply for a 13th year for our children to attend school, we had decided we wanted Daniel to attend an additional year if possible.  Problem was our principal we had a good relationship with and who I know would have supported us moved on in 3rd term 2008.  The acting principal was the deputy who immediately set about trying to get Daniel out of the school at the end of last year ? we won that one and he returned to the school this year.  Anyhow, anyhow, anyhow, the new principal came on board this term and I was convinced that the deputy (who was the acting principal) would have had a major influence in whether or not Dan could do a 13th year and I was feeling that we wouldn?t get a hearing as to why we felt the need for Dan to continue on for the additional year.  However, off we trot, put our case forward ? he says ?do you want the short answer or the long answer?, I sometimes just don?t know when to keep my mouth shut so add a few more points ? really just repeating what I?d already said, when I finally stop he says ?yes?, well, I?m gobsmacked and say in the most intelligent way ?what?, he then say?s ?there is a condition? ( so, I am thinking this was just too easy) when he adds ?his behaviour will have to improve, I agree and say ?place him on a Management Behaviour Program? (laughing) and he says ? it?s not good when Frank (Dan?s Aide) is asking him to go into class and Daniel is bolting out of the school gates and that has to change?.  I swear if you weren?t listening carefully you would have thought he was serious.  He then tells me he?s put all the paper work through and it?s been approved by the education department.  We are still feeling a bit shocked and stunned but absolutely thrilled with the outcome.

    Another nice story, we have been trying to get Daniel into a Work Placement with no luck to date.  One of the things we have been thinking about is him supporting a teacher in a school and thought his old school would be the place to start as we still know quite a few people working there.  The Coordinator phoned me last week to let me know he?s been given a position with his old year 7 teacher to work as an aide beginning next week.  If will be for 5 weeks with a possibility of it continuing.  This type of job fits so well with Daniel and his personality so am very much hoping it will be successful.

    On Wednesday night we will be having Dan?s first Microboard Meeting so feeling a tad nervous, there?s something about inviting people into our lives that leaves us feeling a bit vulnerable ? will they come, if they do will they want to be a part of supporting Dan to continue being included in our community, will they walk the talk!!  I want to change the pinwheel model in that it?s me at the centre organising everything to something that looks much messier with lots of people organising stuff around Dan ? does that make sense?  I will soon find out if it?s realistic to achieve and if so will be so much better for Dan and me.

    I hope everyone is well and keeping the flu?s at bay. 
    Jo

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From familyvoices at inpress.pledgonline.com  Sun Jun 14 07:30:44 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 15 Jun 2009 00:00:44 +0930
Subject: FV: Hi from Jo
In-Reply-To: <000601c9ec8c$f2aa1860$d7fe4920$@net.au>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au>
Message-ID: <COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>


Hi Jo "All Good" and well done in the Nunn household you all deserve lots of praise.
What a shame distances are so great and we are not in to flitting around the country and visiting each other. Clearly we all have so much Knowledge and warm feelings to share. In the High household we are getting ready for the Ireland journey. We are so pleased how hard Rachel has worked on her presentation and how confident she is feeling. I think it is mum who will be sitting on the side lines who will be the most nervous .
My warmest wishes to you all Miriam




To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo






Hi There Everyone,
 
Just an update from the Nunn household and keeping in touch.
 
You may remember me hinting at some Education stuff I wasn?t looking forward to tackling ? well last week was the week that we had the meeting.  In WA we are allowed to apply for a 13th year for our children to attend school, we had decided we wanted Daniel to attend an additional year if possible.  Problem was our principal we had a good relationship with and who I know would have supported us moved on in 3rd term 2008.  The acting principal was the deputy who immediately set about trying to get Daniel out of the school at the end of last year ? we won that one and he returned to the school this year.  Anyhow, anyhow, anyhow, the new principal came on board this term and I was convinced that the deputy (who was the acting principal) would have had a major influence in whether or not Dan could do a 13th year and I was feeling that we wouldn?t get a hearing as to why we felt the need for Dan to continue on for the additional year.  However, off we trot, put our case forward ? he says ?do you want the short answer or the long answer?, I sometimes just don?t know when to keep my mouth shut so add a few more points ? really just repeating what I?d already said, when I finally stop he says ?yes?, well, I?m gobsmacked and say in the most intelligent way ?what?, he then say?s ?there is a condition? ( so, I am thinking this was just too easy) when he adds ?his behaviour will have to improve, I agree and say ?place him on a Management Behaviour Program? (laughing) and he says ? it?s not good when Frank (Dan?s Aide) is asking him to go into class and Daniel is bolting out of the school gates and that has to change?.  I swear if you weren?t listening carefully you would have thought he was serious.  He then tells me he?s put all the paper work through and it?s been approved by the education department.  We are still feeling a bit shocked and stunned but absolutely thrilled with the outcome.
 
Another nice story, we have been trying to get Daniel into a Work Placement with no luck to date.  One of the things we have been thinking about is him supporting a teacher in a school and thought his old school would be the place to start as we still know quite a few people working there.  The Coordinator phoned me last week to let me know he?s been given a position with his old year 7 teacher to work as an aide beginning next week.  If will be for 5 weeks with a possibility of it continuing.  This type of job fits so well with Daniel and his personality so am very much hoping it will be successful.
 
On Wednesday night we will be having Dan?s first Microboard Meeting so feeling a tad nervous, there?s something about inviting people into our lives that leaves us feeling a bit vulnerable ? will they come, if they do will they want to be a part of supporting Dan to continue being included in our community, will they walk the talk!!  I want to change the pinwheel model in that it?s me at the centre organising everything to something that looks much messier with lots of people organising stuff around Dan ? does that make sense?  I will soon find out if it?s realistic to achieve and if so will be so much better for Dan and me.
 
I hope everyone is well and keeping the flu?s at bay.  
Jo
_________________________________________________________________
View photos of singles in your area Click Here
http://dating.ninemsn.com.au/search/search.aspx?exec=go&tp=q&gc=2&tr=1&lage=18&uage=55&cl=14&sl=0&dist=50&po=1&do=2&trackingid=1046138&r2s=1&_t=773166090&_r=WLM_EndText
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From familyvoices at inpress.pledgonline.com  Sun Jun 14 16:32:48 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 15 Jun 2009 09:32:48 +1000
Subject: FV: Hi from Jo
In-Reply-To: <1F90C065D5084246A5AA371517023086@D8XYGK1S>
Message-ID: <00ba01c9ed48$711b42d0$c600a8c0@ANITA>

Hi Jo
 
Lovely news - heartwarming result and I am sure you are encouraged.  I
totally understand how you are feeling about Wednesday, and also about
letting go of the reins or not holding them so tightly.  From our
experience of Warren's Circle of Support it is well worth it!  Yes there
are struggles but it is an evolving process where you find the best
focus for your particular group.  We started with our friends our age
with only three Warren's age, but we now have a six more his age which
speaks well for the future.  Ours is not a microboard but it's still
about people and networks and involvement.  
 
Wishing you all the best!!
J

Anita 

 

-----Original Message-----
From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] 
Sent: Sunday, 14 June 2009 9:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo


Good stuff Jo.
All the worry and hard work and planning has paid off for you and Dan.
Good luck for Wednesday and your meeting. I hope it goes well.
Surrounding Dan with caring people in his life sounds like a very
positive step.  Maureen

----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Sunday, June 14, 2009 3:49 PM
Subject: Re: FV: Hi from Jo

Hi Jo

Great to hear your fantastic news - it's so heartening that such great
things are happening.

I hope you have had time to take a breath, remind yourself of all the
hard work you have have done, take the credit and enjoy the rewards and
the moment!  The nervousness of having new people entering Dan's life -
the trust/hope/confidence factor is HUGE!!    Finding that balance of
stepping back but being there is always so hard.  I hope the meeting
goes well on Wednesday.
Regards
Jill




Hi There Everyone,

Just an update from the Nunn household and keeping in touch.

You may remember me hinting at some Education stuff I wasn't looking
forward to tackling - well last week was the week that we had the
meeting.  In WA we are allowed to apply for a 13th year for our children
to attend school, we had decided we wanted Daniel to attend an
additional year if possible.  Problem was our principal we had a good
relationship with and who I know would have supported us moved on in 3rd
term 2008.  The acting principal was the deputy who immediately set
about trying to get Daniel out of the school at the end of last year -
we won that one and he returned to the school this year.  Anyhow,
anyhow, anyhow, the new principal came on board this term and I was
convinced that the deputy (who was the acting principal) would have had
a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for
Dan to continue on for the additional year.  However, off we trot, put
our case forward - he says "do you want the short answer or the long
answer", I sometimes just don't know when to keep my mouth shut so add a
few more points - really just repeating what I'd already said, when I
finally stop he says "yes", well, I'm gobsmacked and say in the most
intelligent way "what", he then say's "there is a condition" ( so, I am
thinking this was just too easy) when he adds "his behaviour will have
to improve, I agree and say "place him on a Management Behaviour
Program" (laughing) and he says " it's not good when Frank (Dan's Aide)
is asking him to go into class and Daniel is bolting out of the school
gates and that has to change".  I swear if you weren't listening
carefully you would have thought he was serious.  He then tells me he's
put all the paper work through and it's been approved by the education
department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

Another nice story, we have been trying to get Daniel into a Work
Placement with no luck to date.  One of the things we have been thinking
about is him supporting a teacher in a school and thought his old school
would be the place to start as we still know quite a few people working
there.  The Coordinator phoned me last week to let me know he's been
given a position with his old year 7 teacher to work as an aide
beginning next week.  If will be for 5 weeks with a possibility of it
continuing.  This type of job fits so well with Daniel and his
personality so am very much hoping it will be successful.

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they
do will they want to be a part of supporting Dan to continue being
included in our community, will they walk the talk!!  I want to change
the pinwheel model in that it's me at the centre organising everything
to something that looks much messier with lots of people organising
stuff around Dan - does that make sense?  I will soon find out if it's
realistic to achieve and if so will be so much better for Dan and me.

I hope everyone is well and keeping the flu's at bay. 
Jo


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From familyvoices at inpress.pledgonline.com  Sun Jun 14 17:07:29 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 15 Jun 2009 08:07:29 +0800
Subject: FV: Hi from Jo
In-Reply-To: <00ba01c9ed48$711b42d0$c600a8c0@ANITA>
References: <1F90C065D5084246A5AA371517023086@D8XYGK1S>
	<00ba01c9ed48$711b42d0$c600a8c0@ANITA>
Message-ID: <000e01c9ed4d$460b2510$d2216f30$@net.au>

That's very cool Anita!

 

Do you have any reflections about the process of how you transformed the
circle to being more peer based?

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 15 June 2009 7:33 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo

 

Lovely news - heartwarming result and I am sure you are encouraged.  I
totally understand how you are feeling about Wednesday, and also about
letting go of the reins or not holding them so tightly.  From our experience
of Warren's Circle of Support it is well worth it!  Yes there are struggles
but it is an evolving process where you find the best focus for your
particular group.  We started with our friends our age with only three
Warren's age, but we now have a six more his age which speaks well for the
future.  Ours is not a microboard but it's still about people and networks
and involvement.  

 

Wishing you all the best!!

J

Anita 

 

-----Original Message-----
From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] 
Sent: Sunday, 14 June 2009 9:19 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

Good stuff Jo.

All the worry and hard work and planning has paid off for you and Dan. Good
luck for Wednesday and your meeting. I hope it goes well. Surrounding Dan
with caring people in his life sounds like a very positive step.  Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Sunday, June 14, 2009 3:49 PM

Subject: Re: FV: Hi from Jo

 

Hi Jo

Great to hear your fantastic news - it's so heartening that such great
things are happening.

I hope you have had time to take a breath, remind yourself of all the hard
work you have have done, take the credit and enjoy the rewards and the
moment!  The nervousness of having new people entering Dan's life -  the
trust/hope/confidence factor is HUGE!!    Finding that balance of stepping
back but being there is always so hard.  I hope the meeting goes well on
Wednesday.

Regards

Jill

 





Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay. 

Jo

 

-------------- next part --------------
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From familyvoices at inpress.pledgonline.com  Mon Jun 15 18:14:27 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 16 Jun 2009 09:14:27 +0800
Subject: FV: Hi from Jo
In-Reply-To: <COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au>
	<COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>
Message-ID: <000a01c9ee1f$cb356200$61a02600$@net.au>

Thanks everyone, it was lovely to hear from you all.  

 

Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and
to share - who knows who'll be drifting into town for the odd catch up and
although this isn't quite the same still a great way to stay in touch.  I
can so understand your nervousness and I am in awe of people who can go onto
stage with all that confidence.  Please pass on my congratulations to Rachel
on all her hard work and wishing you both a fabulous trip.   When do you get
back?

 

Anita, your description of not holding on too tightly and knowing when to
let go is the one I struggle with constantly, if you have any tips to share
would love to hear them.  When did you start Warren's circle of support and
did you develop it yourself or use a model from somewhere,  have you been
challenged with any radical suggestions and if so, how did you manage it.
Hope you don't mind all these questions but another one is, do you think the
circle would be self sustaining if you were not involved - this is my aim
for Dan's support and would love to hear your thoughts.

 

I have just dropped Dan off to his Work Placement, everyone was very warm
and welcoming.  He so knew something was up this morning, wearing spiffy
clothes (not the usual school uniform) and I had been telling him he was
going to his old school to support the teacher, he was talking to me nonstop
and pulling everything off the table and bench tops (I wasn't enjoying that
bit) but think it was to do with some nervousness on his part.

 

One more sleep and we have our evening with friends, will give you some
feedback on how the night goes.

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo "All Good" and well done in the Nunn household you all deserve lots of
praise.
What a shame distances are so great and we are not in to flitting around the
country and visiting each other. Clearly we all have so much Knowledge and
warm feelings to share. In the High household we are getting ready for the
Ireland journey. We are so pleased how hard Rachel has worked on her
presentation and how confident she is feeling. I think it is mum who will be
sitting on the side lines who will be the most nervous .
My warmest wishes to you all Miriam

  _____  


To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo



Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay.  

Jo

 

  _____  

Click Here View photos of singles in your area
<http://dating.ninemsn.com.au/search/search.aspx?exec=go&tp=q&gc=2&tr=1&lage
=18&uage=55&cl=14&sl=0&dist=50&po=1&do=2&trackingid=1046138&r2s=1&_t=7731660
90&_r=WLM_EndText> 

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From familyvoices at inpress.pledgonline.com  Mon Jun 15 22:51:18 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 16 Jun 2009 15:51:18 +1000
Subject: FV: Hi from Jo
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>
	<000a01c9ee1f$cb356200$61a02600$@net.au>
Message-ID: <9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S>

Look forward to hearing how it all goes Jo, both with Dan's work placement and your circles meeting.
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Tuesday, June 16, 2009 11:14 AM
  Subject: Re: FV: Hi from Jo


  Thanks everyone, it was lovely to hear from you all.  

   

  Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and to share - who knows who'll be drifting into town for the odd catch up and although this isn't quite the same still a great way to stay in touch.  I can so understand your nervousness and I am in awe of people who can go onto stage with all that confidence.  Please pass on my congratulations to Rachel on all her hard work and wishing you both a fabulous trip.   When do you get back?

   

  Anita, your description of not holding on too tightly and knowing when to let go is the one I struggle with constantly, if you have any tips to share would love to hear them.  When did you start Warren's circle of support and did you develop it yourself or use a model from somewhere,  have you been challenged with any radical suggestions and if so, how did you manage it.  Hope you don't mind all these questions but another one is, do you think the circle would be self sustaining if you were not involved - this is my aim for Dan's support and would love to hear your thoughts.

   

  I have just dropped Dan off to his Work Placement, everyone was very warm and welcoming.  He so knew something was up this morning, wearing spiffy clothes (not the usual school uniform) and I had been telling him he was going to his old school to support the teacher, he was talking to me nonstop and pulling everything off the table and bench tops (I wasn't enjoying that bit) but think it was to do with some nervousness on his part.

   

  One more sleep and we have our evening with friends, will give you some feedback on how the night goes.

  Jo

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Sunday, 14 June 2009 10:31 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi from Jo

   

  Hi Jo "All Good" and well done in the Nunn household you all deserve lots of praise.
  What a shame distances are so great and we are not in to flitting around the country and visiting each other. Clearly we all have so much Knowledge and warm feelings to share. In the High household we are getting ready for the Ireland journey. We are so pleased how hard Rachel has worked on her presentation and how confident she is feeling. I think it is mum who will be sitting on the side lines who will be the most nervous .
  My warmest wishes to you all Miriam


------------------------------------------------------------------------------


  To: familyvoices at inpress.pledgonline.com
  Date: Sun, 14 Jun 2009 09:10:46 +0800
  From: familyvoices at inpress.pledgonline.com
  Subject: FV: Hi from Jo



  Hi There Everyone,

   

  Just an update from the Nunn household and keeping in touch.

   

  You may remember me hinting at some Education stuff I wasn't looking forward to tackling - well last week was the week that we had the meeting.  In WA we are allowed to apply for a 13th year for our children to attend school, we had decided we wanted Daniel to attend an additional year if possible.  Problem was our principal we had a good relationship with and who I know would have supported us moved on in 3rd term 2008.  The acting principal was the deputy who immediately set about trying to get Daniel out of the school at the end of last year - we won that one and he returned to the school this year.  Anyhow, anyhow, anyhow, the new principal came on board this term and I was convinced that the deputy (who was the acting principal) would have had a major influence in whether or not Dan could do a 13th year and I was feeling that we wouldn't get a hearing as to why we felt the need for Dan to continue on for the additional year.  However, off we trot, put our case forward - he says "do you want the short answer or the long answer", I sometimes just don't know when to keep my mouth shut so add a few more points - really just repeating what I'd already said, when I finally stop he says "yes", well, I'm gobsmacked and say in the most intelligent way "what", he then say's "there is a condition" ( so, I am thinking this was just too easy) when he adds "his behaviour will have to improve, I agree and say "place him on a Management Behaviour Program" (laughing) and he says " it's not good when Frank (Dan's Aide) is asking him to go into class and Daniel is bolting out of the school gates and that has to change".  I swear if you weren't listening carefully you would have thought he was serious.  He then tells me he's put all the paper work through and it's been approved by the education department.  We are still feeling a bit shocked and stunned but absolutely thrilled with the outcome.

   

  Another nice story, we have been trying to get Daniel into a Work Placement with no luck to date.  One of the things we have been thinking about is him supporting a teacher in a school and thought his old school would be the place to start as we still know quite a few people working there.  The Coordinator phoned me last week to let me know he's been given a position with his old year 7 teacher to work as an aide beginning next week.  If will be for 5 weeks with a possibility of it continuing.  This type of job fits so well with Daniel and his personality so am very much hoping it will be successful.

   

  On Wednesday night we will be having Dan's first Microboard Meeting so feeling a tad nervous, there's something about inviting people into our lives that leaves us feeling a bit vulnerable - will they come, if they do will they want to be a part of supporting Dan to continue being included in our community, will they walk the talk!!  I want to change the pinwheel model in that it's me at the centre organising everything to something that looks much messier with lots of people organising stuff around Dan - does that make sense?  I will soon find out if it's realistic to achieve and if so will be so much better for Dan and me.

   

  I hope everyone is well and keeping the flu's at bay.  

  Jo

   


------------------------------------------------------------------------------

  Click Here View photos of singles in your area
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From familyvoices at inpress.pledgonline.com  Tue Jun 16 03:18:14 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 16 Jun 2009 18:18:14 +0800
Subject: FV: Hi from Jo
In-Reply-To: <9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>
	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S>
Message-ID: <000001c9ee6b$c2c791a0$4856b4e0$@net.au>

Thanks Maureen, he had a great day today with everyone thrilled to see him
again.  Frank said it will be better next week in regard to him helping the
teacher now that they have a few ideas so here's hoping.  I walked Dan home
from the school and as we passed the teachers car park his old library
teacher stopped and yelled out "Dan came to my library to see me today", she
had genuine warmth and excitement in her voice - wonderful for me to hear.
Give me a few days to get over this hive of activity and I'll sit down doing
some reflections on how tomorrow night goes.  

 

It's so lovely to hear from you, hoping all is going well over your way,

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 1:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Look forward to hearing how it all goes Jo, both with Dan's work placement
and your circles meeting.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 11:14 AM

Subject: Re: FV: Hi from Jo

 

Thanks everyone, it was lovely to hear from you all.  

 

Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and
to share - who knows who'll be drifting into town for the odd catch up and
although this isn't quite the same still a great way to stay in touch.  I
can so understand your nervousness and I am in awe of people who can go onto
stage with all that confidence.  Please pass on my congratulations to Rachel
on all her hard work and wishing you both a fabulous trip.   When do you get
back?

 

Anita, your description of not holding on too tightly and knowing when to
let go is the one I struggle with constantly, if you have any tips to share
would love to hear them.  When did you start Warren's circle of support and
did you develop it yourself or use a model from somewhere,  have you been
challenged with any radical suggestions and if so, how did you manage it.
Hope you don't mind all these questions but another one is, do you think the
circle would be self sustaining if you were not involved - this is my aim
for Dan's support and would love to hear your thoughts.

 

I have just dropped Dan off to his Work Placement, everyone was very warm
and welcoming.  He so knew something was up this morning, wearing spiffy
clothes (not the usual school uniform) and I had been telling him he was
going to his old school to support the teacher, he was talking to me nonstop
and pulling everything off the table and bench tops (I wasn't enjoying that
bit) but think it was to do with some nervousness on his part.

 

One more sleep and we have our evening with friends, will give you some
feedback on how the night goes.

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo "All Good" and well done in the Nunn household you all deserve lots of
praise.
What a shame distances are so great and we are not in to flitting around the
country and visiting each other. Clearly we all have so much Knowledge and
warm feelings to share. In the High household we are getting ready for the
Ireland journey. We are so pleased how hard Rachel has worked on her
presentation and how confident she is feeling. I think it is mum who will be
sitting on the side lines who will be the most nervous .
My warmest wishes to you all Miriam


  _____  



To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo

Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay.  

Jo

 


  _____  


Click Here View photos of singles in your area
<http://dating.ninemsn.com.au/search/search.aspx?exec=go&tp=q&gc=2&tr=1&lage
=18&uage=55&cl=14&sl=0&dist=50&po=1&do=2&trackingid=1046138&r2s=1&_t=7731660
90&_r=WLM_EndText> 

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From familyvoices at inpress.pledgonline.com  Tue Jun 16 05:08:19 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 16 Jun 2009 20:08:19 +0800
Subject: FV: Hi from Jo
In-Reply-To: <000001c9ee6b$c2c791a0$4856b4e0$@net.au>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S>
	<000001c9ee6b$c2c791a0$4856b4e0$@net.au>
Message-ID: <004b01c9ee7b$235a2c30$6a0e8490$@net.au>

Thats so awesome Jo! You made my night!!!

 

Jaquie xx

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 6:18 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Thanks Maureen, he had a great day today with everyone thrilled to see him
again.  Frank said it will be better next week in regard to him helping the
teacher now that they have a few ideas so here's hoping.  I walked Dan home
from the school and as we passed the teachers car park his old library
teacher stopped and yelled out "Dan came to my library to see me today", she
had genuine warmth and excitement in her voice - wonderful for me to hear.
Give me a few days to get over this hive of activity and I'll sit down doing
some reflections on how tomorrow night goes.  

 

It's so lovely to hear from you, hoping all is going well over your way,

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 1:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Look forward to hearing how it all goes Jo, both with Dan's work placement
and your circles meeting.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 11:14 AM

Subject: Re: FV: Hi from Jo

 

Thanks everyone, it was lovely to hear from you all.  

 

Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and
to share - who knows who'll be drifting into town for the odd catch up and
although this isn't quite the same still a great way to stay in touch.  I
can so understand your nervousness and I am in awe of people who can go onto
stage with all that confidence.  Please pass on my congratulations to Rachel
on all her hard work and wishing you both a fabulous trip.   When do you get
back?

 

Anita, your description of not holding on too tightly and knowing when to
let go is the one I struggle with constantly, if you have any tips to share
would love to hear them.  When did you start Warren's circle of support and
did you develop it yourself or use a model from somewhere,  have you been
challenged with any radical suggestions and if so, how did you manage it.
Hope you don't mind all these questions but another one is, do you think the
circle would be self sustaining if you were not involved - this is my aim
for Dan's support and would love to hear your thoughts.

 

I have just dropped Dan off to his Work Placement, everyone was very warm
and welcoming.  He so knew something was up this morning, wearing spiffy
clothes (not the usual school uniform) and I had been telling him he was
going to his old school to support the teacher, he was talking to me nonstop
and pulling everything off the table and bench tops (I wasn't enjoying that
bit) but think it was to do with some nervousness on his part.

 

One more sleep and we have our evening with friends, will give you some
feedback on how the night goes.

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo "All Good" and well done in the Nunn household you all deserve lots of
praise.
What a shame distances are so great and we are not in to flitting around the
country and visiting each other. Clearly we all have so much Knowledge and
warm feelings to share. In the High household we are getting ready for the
Ireland journey. We are so pleased how hard Rachel has worked on her
presentation and how confident she is feeling. I think it is mum who will be
sitting on the side lines who will be the most nervous .
My warmest wishes to you all Miriam


  _____  



To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo

Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay.  

Jo

 


  _____  


Click Here View photos of singles in your area
<http://dating.ninemsn.com.au/search/search.aspx?exec=go&tp=q&gc=2&tr=1&lage
=18&uage=55&cl=14&sl=0&dist=50&po=1&do=2&trackingid=1046138&r2s=1&_t=7731660
90&_r=WLM_EndText> 

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From familyvoices at inpress.pledgonline.com  Tue Jun 16 14:26:25 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Wed, 17 Jun 2009 05:26:25 +0800
Subject: FV: Hi from Jo
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>
	<004b01c9ee7b$235a2c30$6a0e8490$@net.au>
Message-ID: <701423EF02784E27809819C914E46EE3@hp>

Hi Jo 
It is great to read what you are up to. I know what you meant about the library teacher it, and how much impact those few kind words have.
Sharon and myself are puting together a similar evening with friends next week. Darrell will be joining us aswell for a few days to disscus the 
possibility of Elliot going to an Ag school next year. Scarry stuff as the closest Ag school is 4000 km away. has anybody had any experience
with there kids in an Ag school boarding situation. would love to here positive or negative. 
I still dont know what date  I will be in Perth but would love to catch up .about mid August.
Cheers Al Mason----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Tuesday, June 16, 2009 8:08 PM
  Subject: Re: FV: Hi from Jo


  Thats so awesome Jo! You made my night!!!

   

  Jaquie xx

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Tuesday, 16 June 2009 6:18 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi from Jo

   

  Thanks Maureen, he had a great day today with everyone thrilled to see him again.  Frank said it will be better next week in regard to him helping the teacher now that they have a few ideas so here's hoping.  I walked Dan home from the school and as we passed the teachers car park his old library teacher stopped and yelled out "Dan came to my library to see me today", she had genuine warmth and excitement in her voice - wonderful for me to hear.  Give me a few days to get over this hive of activity and I'll sit down doing some reflections on how tomorrow night goes.  

   

  It's so lovely to hear from you, hoping all is going well over your way,

  Jo

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Tuesday, 16 June 2009 1:51 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi from Jo

   

  Look forward to hearing how it all goes Jo, both with Dan's work placement and your circles meeting.

  Maureen

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Tuesday, June 16, 2009 11:14 AM

    Subject: Re: FV: Hi from Jo

     

    Thanks everyone, it was lovely to hear from you all.  

     

    Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and to share - who knows who'll be drifting into town for the odd catch up and although this isn't quite the same still a great way to stay in touch.  I can so understand your nervousness and I am in awe of people who can go onto stage with all that confidence.  Please pass on my congratulations to Rachel on all her hard work and wishing you both a fabulous trip.   When do you get back?

     

    Anita, your description of not holding on too tightly and knowing when to let go is the one I struggle with constantly, if you have any tips to share would love to hear them.  When did you start Warren's circle of support and did you develop it yourself or use a model from somewhere,  have you been challenged with any radical suggestions and if so, how did you manage it.  Hope you don't mind all these questions but another one is, do you think the circle would be self sustaining if you were not involved - this is my aim for Dan's support and would love to hear your thoughts.

     

    I have just dropped Dan off to his Work Placement, everyone was very warm and welcoming.  He so knew something was up this morning, wearing spiffy clothes (not the usual school uniform) and I had been telling him he was going to his old school to support the teacher, he was talking to me nonstop and pulling everything off the table and bench tops (I wasn't enjoying that bit) but think it was to do with some nervousness on his part.

     

    One more sleep and we have our evening with friends, will give you some feedback on how the night goes.

    Jo

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Sunday, 14 June 2009 10:31 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi from Jo

     

    Hi Jo "All Good" and well done in the Nunn household you all deserve lots of praise.
    What a shame distances are so great and we are not in to flitting around the country and visiting each other. Clearly we all have so much Knowledge and warm feelings to share. In the High household we are getting ready for the Ireland journey. We are so pleased how hard Rachel has worked on her presentation and how confident she is feeling. I think it is mum who will be sitting on the side lines who will be the most nervous .
    My warmest wishes to you all Miriam


----------------------------------------------------------------------------


    To: familyvoices at inpress.pledgonline.com
    Date: Sun, 14 Jun 2009 09:10:46 +0800
    From: familyvoices at inpress.pledgonline.com
    Subject: FV: Hi from Jo

    Hi There Everyone,

     

    Just an update from the Nunn household and keeping in touch.

     

    You may remember me hinting at some Education stuff I wasn't looking forward to tackling - well last week was the week that we had the meeting.  In WA we are allowed to apply for a 13th year for our children to attend school, we had decided we wanted Daniel to attend an additional year if possible.  Problem was our principal we had a good relationship with and who I know would have supported us moved on in 3rd term 2008.  The acting principal was the deputy who immediately set about trying to get Daniel out of the school at the end of last year - we won that one and he returned to the school this year.  Anyhow, anyhow, anyhow, the new principal came on board this term and I was convinced that the deputy (who was the acting principal) would have had a major influence in whether or not Dan could do a 13th year and I was feeling that we wouldn't get a hearing as to why we felt the need for Dan to continue on for the additional year.  However, off we trot, put our case forward - he says "do you want the short answer or the long answer", I sometimes just don't know when to keep my mouth shut so add a few more points - really just repeating what I'd already said, when I finally stop he says "yes", well, I'm gobsmacked and say in the most intelligent way "what", he then say's "there is a condition" ( so, I am thinking this was just too easy) when he adds "his behaviour will have to improve, I agree and say "place him on a Management Behaviour Program" (laughing) and he says " it's not good when Frank (Dan's Aide) is asking him to go into class and Daniel is bolting out of the school gates and that has to change".  I swear if you weren't listening carefully you would have thought he was serious.  He then tells me he's put all the paper work through and it's been approved by the education department.  We are still feeling a bit shocked and stunned but absolutely thrilled with the outcome.

     

    Another nice story, we have been trying to get Daniel into a Work Placement with no luck to date.  One of the things we have been thinking about is him supporting a teacher in a school and thought his old school would be the place to start as we still know quite a few people working there.  The Coordinator phoned me last week to let me know he's been given a position with his old year 7 teacher to work as an aide beginning next week.  If will be for 5 weeks with a possibility of it continuing.  This type of job fits so well with Daniel and his personality so am very much hoping it will be successful.

     

    On Wednesday night we will be having Dan's first Microboard Meeting so feeling a tad nervous, there's something about inviting people into our lives that leaves us feeling a bit vulnerable - will they come, if they do will they want to be a part of supporting Dan to continue being included in our community, will they walk the talk!!  I want to change the pinwheel model in that it's me at the centre organising everything to something that looks much messier with lots of people organising stuff around Dan - does that make sense?  I will soon find out if it's realistic to achieve and if so will be so much better for Dan and me.

     

    I hope everyone is well and keeping the flu's at bay.  

    Jo

     


----------------------------------------------------------------------------

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From familyvoices at inpress.pledgonline.com  Tue Jun 16 18:09:18 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Wed, 17 Jun 2009 09:09:18 +0800
Subject: FV: Hi from Jo
In-Reply-To: <701423EF02784E27809819C914E46EE3@hp>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au>
	<701423EF02784E27809819C914E46EE3@hp>
Message-ID: <000601c9eee8$3d69d860$b83d8920$@net.au>

Hi There Al,

Wonderful to hear from you.  Wow, I am still absorbing the possibility of
Elliot going to boarding school, how amazing would that be.  I hope you get
some responses from people as it will be so interesting to learn how they
went about it.   I haven't heard of anyone doing it but being a city gal and
not having anything to do with boarding schools down here it doesn't put me
in that area.

 

I'll be thinking of you all next week talking about all this stuff and hope
you'll have the time to let us know how it goes.  I am so with you on the
scary bit, and  exciting at the same time wondering where all these
discussions and actions will take us and thrilled to be sharing with
likeminded people.  

 

I feel like I'm getting to know Sharon and Elliot through you so please say
hi to them for me.  Are they coming down in August too?

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Wednesday, 17 June 2009 5:26 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo 

It is great to read what you are up to. I know what you meant about the
library teacher it, and how much impact those few kind words have.

Sharon and myself are puting together a similar evening with friends next
week. Darrell will be joining us aswell for a few days to disscus the 

possibility of Elliot going to an Ag school next year. Scarry stuff as the
closest Ag school is 4000 km away. has anybody had any experience

with there kids in an Ag school boarding situation. would love to here
positive or negative. 

I still dont know what date  I will be in Perth but would love to catch up
.about mid August.

Cheers Al Mason----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 8:08 PM

Subject: Re: FV: Hi from Jo

 

Thats so awesome Jo! You made my night!!!

 

Jaquie xx

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 6:18 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Thanks Maureen, he had a great day today with everyone thrilled to see him
again.  Frank said it will be better next week in regard to him helping the
teacher now that they have a few ideas so here's hoping.  I walked Dan home
from the school and as we passed the teachers car park his old library
teacher stopped and yelled out "Dan came to my library to see me today", she
had genuine warmth and excitement in her voice - wonderful for me to hear.
Give me a few days to get over this hive of activity and I'll sit down doing
some reflections on how tomorrow night goes.  

 

It's so lovely to hear from you, hoping all is going well over your way,

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 1:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Look forward to hearing how it all goes Jo, both with Dan's work placement
and your circles meeting.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 11:14 AM

Subject: Re: FV: Hi from Jo

 

Thanks everyone, it was lovely to hear from you all.  

 

Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and
to share - who knows who'll be drifting into town for the odd catch up and
although this isn't quite the same still a great way to stay in touch.  I
can so understand your nervousness and I am in awe of people who can go onto
stage with all that confidence.  Please pass on my congratulations to Rachel
on all her hard work and wishing you both a fabulous trip.   When do you get
back?

 

Anita, your description of not holding on too tightly and knowing when to
let go is the one I struggle with constantly, if you have any tips to share
would love to hear them.  When did you start Warren's circle of support and
did you develop it yourself or use a model from somewhere,  have you been
challenged with any radical suggestions and if so, how did you manage it.
Hope you don't mind all these questions but another one is, do you think the
circle would be self sustaining if you were not involved - this is my aim
for Dan's support and would love to hear your thoughts.

 

I have just dropped Dan off to his Work Placement, everyone was very warm
and welcoming.  He so knew something was up this morning, wearing spiffy
clothes (not the usual school uniform) and I had been telling him he was
going to his old school to support the teacher, he was talking to me nonstop
and pulling everything off the table and bench tops (I wasn't enjoying that
bit) but think it was to do with some nervousness on his part.

 

One more sleep and we have our evening with friends, will give you some
feedback on how the night goes.

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo "All Good" and well done in the Nunn household you all deserve lots of
praise.
What a shame distances are so great and we are not in to flitting around the
country and visiting each other. Clearly we all have so much Knowledge and
warm feelings to share. In the High household we are getting ready for the
Ireland journey. We are so pleased how hard Rachel has worked on her
presentation and how confident she is feeling. I think it is mum who will be
sitting on the side lines who will be the most nervous .
My warmest wishes to you all Miriam


  _____  



To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo

Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay.  

Jo

 


  _____  


Click Here View photos of singles in your area
<http://dating.ninemsn.com.au/search/search.aspx?exec=go&tp=q&gc=2&tr=1&lage
=18&uage=55&cl=14&sl=0&dist=50&po=1&do=2&trackingid=1046138&r2s=1&_t=7731660
90&_r=WLM_EndText> 

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From familyvoices at inpress.pledgonline.com  Wed Jun 17 18:12:12 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Thu, 18 Jun 2009 11:12:12 +1000
Subject: FV: National Petition for The Implementation of a National
	Disability Insurance Scheme
Message-ID: <004301c9efb1$d06a3140$713e93c0$@Speed@mamre.org.au>

Hi all,

Here is a link for a petition for supporting the implementation of a
National Disability Insurance Scheme.

 

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: Sandi Seymour [mailto:sandi.voc at wwild.org] 
Sent: Tuesday, 16 June 2009 2:48 PM
To: 'Anita Speed'; 'Coordinator'
Subject: FW: National Petition for The Implementation of a National
Disability Insurance Scheme

 

 

 

  _____  

From: Dell Hele [mailto:d.hele at uq.edu.au] 
Sent: Monday, 15 June 2009 10:08 AM
Subject: National Petition for The Implementation of a National Disability
Insurance Scheme

 

 

 

From: Miriam Taylor 
Sent: Monday, 15 June 2009 9:34 AM
To: Dell Hele
Subject: Dell would you mind sending this out? thanks!

 

http://www.natdis.com.au/petition_ndis%20.pdf

 

 

Miriam Taylor

Research Project Officer

QCIDD - Queensland Centre for Intellectual & Developmental Disability

University of Queensland, School of Medicine

Mater Community Services Building,

Mater Hospital, Annerley Rd., South Brisbane, Qld, 4101, Australia

Ph:  61-7-3163 2446     Fax:  61-7-3163 2445

http://www.som.uq.edu.au/research/qcidd/default.asp

P Please consider the environment before printing my email.

Although the world is full of suffering, it is also full of the overcoming
of it. (Helen Keller)

 

!DSPAM:585,4a3723da319833708835974! 

Internal Virus Database is out of date.
Checked by AVG - http://www.avg.com
Version: 8.0.176 / Virus Database: 270.10.18/1936 - Release Date: 5/02/2009
11:34 AM

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From familyvoices at inpress.pledgonline.com  Wed Jun 17 19:58:58 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Thu, 18 Jun 2009 10:58:58 +0800
Subject: FV: Hi from Jo
In-Reply-To: <000601c9eee8$3d69d860$b83d8920$@net.au>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au>
	<701423EF02784E27809819C914E46EE3@hp>
	<000601c9eee8$3d69d860$b83d8920$@net.au>
Message-ID: <8AC72F6C-FFD5-4600-A191-2A7E4481A468@include.com.au>

Hi Al
There was an Australian Story video on 'Claire goes to College' that  
showed a country girl going to boarding school.  I have a copy that I  
could send up via Darrell if you like.  Need it back sometime as I  
use it for teaching.

Bob
----------------------------------------------------------
Bob Jackson PhD
Psychologist
Adjunct Associate Professor of Education
Edith Cowan University

Include Pty Ltd
21 Anembo road
Carmel  WA  6076
Phone:       61-8-92935302
Mobile:  0407667108
www.include.com.au
----------------------------------------------



On 17/06/2009, at 9:09 AM, Family Voices wrote:

Hi There Al,
Wonderful to hear from you.  Wow, I am still absorbing the  
possibility of Elliot going to boarding school, how amazing would  
that be.  I hope you get some responses from people as it will be so  
interesting to learn how they went about it.   I haven?t heard of  
anyone doing it but being a city gal and not having anything to do  
with boarding schools down here it doesn?t put me in that area.

I?ll be thinking of you all next week talking about all this stuff  
and hope you?ll have the time to let us know how it goes.  I am so  
with you on the scary bit, and  exciting at the same time wondering  
where all these discussions and actions will take us and thrilled to  
be sharing with likeminded people.

I feel like I?m getting to know Sharon and Elliot through you so  
please say hi to them for me.  Are they coming down in August too?
Jo

From: familyvoices-bounces at inpress.pledgonline.com  
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of  
Family Voices
Sent: Wednesday, 17 June 2009 5:26 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

Hi Jo
It is great to read what you are up to. I know what you meant about  
the library teacher it, and how much impact those few kind words have.
Sharon and myself are puting together a similar evening with friends  
next week. Darrell will be joining us aswell for a few days to  
disscus the
possibility of Elliot going to an Ag school next year. Scarry stuff  
as the closest Ag school is 4000 km away. has anybody had any experience
with there kids in an Ag school boarding situation. would love to  
here positive or negative.
I still dont know what date  I will be in Perth but would love to  
catch up .about mid August.
Cheers Al Mason----- Original Message -----
From: Family Voices
To: familyvoices at inpress.pledgonline.com
Sent: Tuesday, June 16, 2009 8:08 PM
Subject: Re: FV: Hi from Jo

Thats so awesome Jo! You made my night!!!

Jaquie xx

From: familyvoices-bounces at inpress.pledgonline.com  
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of  
Family Voices
Sent: Tuesday, 16 June 2009 6:18 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

Thanks Maureen, he had a great day today with everyone thrilled to  
see him again.  Frank said it will be better next week in regard to  
him helping the teacher now that they have a few ideas so here?s  
hoping.  I walked Dan home from the school and as we passed the  
teachers car park his old library teacher stopped and yelled out ?Dan  
came to my library to see me today?, she had genuine warmth and  
excitement in her voice ? wonderful for me to hear.  Give me a few  
days to get over this hive of activity and I?ll sit down doing some  
reflections on how tomorrow night goes.

It?s so lovely to hear from you, hoping all is going well over your way,
Jo

From: familyvoices-bounces at inpress.pledgonline.com  
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of  
Family Voices
Sent: Tuesday, 16 June 2009 1:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

Look forward to hearing how it all goes Jo, both with Dan's work  
placement and your circles meeting.
Maureen
----- Original Message -----
From: Family Voices
To: familyvoices at inpress.pledgonline.com
Sent: Tuesday, June 16, 2009 11:14 AM
Subject: Re: FV: Hi from Jo

Thanks everyone, it was lovely to hear from you all.

Yes Miriam, I would love to drop in for a cuppa and chat, to meet  
Rachel and to share ? who knows who?ll be drifting into town for the  
odd catch up and although this isn?t quite the same still a great way  
to stay in touch.  I can so understand your nervousness and I am in  
awe of people who can go onto stage with all that confidence.  Please  
pass on my congratulations to Rachel on all her hard work and wishing  
you both a fabulous trip.   When do you get back?

Anita, your description of not holding on too tightly and knowing  
when to let go is the one I struggle with constantly, if you have any  
tips to share would love to hear them.  When did you start Warren?s  
circle of support and did you develop it yourself or use a model from  
somewhere,  have you been challenged with any radical suggestions and  
if so, how did you manage it.  Hope you don?t mind all these  
questions but another one is, do you think the circle would be self  
sustaining if you were not involved ? this is my aim for Dan?s  
support and would love to hear your thoughts.

I have just dropped Dan off to his Work Placement, everyone was very  
warm and welcoming.  He so knew something was up this morning,  
wearing spiffy clothes (not the usual school uniform) and I had been  
telling him he was going to his old school to support the teacher, he  
was talking to me nonstop and pulling everything off the table and  
bench tops (I wasn?t enjoying that bit) but think it was to do with  
some nervousness on his part.

One more sleep and we have our evening with friends, will give you  
some feedback on how the night goes.
Jo

From: familyvoices-bounces at inpress.pledgonline.com  
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of  
Family Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

Hi Jo "All Good" and well done in the Nunn household you all deserve  
lots of praise.
What a shame distances are so great and we are not in to flitting  
around the country and visiting each other. Clearly we all have so  
much Knowledge and warm feelings to share. In the High household we  
are getting ready for the Ireland journey. We are so pleased how hard  
Rachel has worked on her presentation and how confident she is  
feeling. I think it is mum who will be sitting on the side lines who  
will be the most nervous .
My warmest wishes to you all Miriam


To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo

Hi There Everyone,

Just an update from the Nunn household and keeping in touch.

You may remember me hinting at some Education stuff I wasn?t looking  
forward to tackling ? well last week was the week that we had the  
meeting.  In WA we are allowed to apply for a 13th year for our  
children to attend school, we had decided we wanted Daniel to attend  
an additional year if possible.  Problem was our principal we had a  
good relationship with and who I know would have supported us moved  
on in 3rd term 2008.  The acting principal was the deputy who  
immediately set about trying to get Daniel out of the school at the  
end of last year ? we won that one and he returned to the school this  
year.  Anyhow, anyhow, anyhow, the new principal came on board this  
term and I was convinced that the deputy (who was the acting  
principal) would have had a major influence in whether or not Dan  
could do a 13th year and I was feeling that we wouldn?t get a hearing  
as to why we felt the need for Dan to continue on for the additional  
year.  However, off we trot, put our case forward ? he says ?do you  
want the short answer or the long answer?, I sometimes just don?t  
know when to keep my mouth shut so add a few more points ? really  
just repeating what I?d already said, when I finally stop he says  
?yes?, well, I?m gobsmacked and say in the most intelligent way  
?what?, he then say?s ?there is a condition? ( so, I am thinking this  
was just too easy) when he adds ?his behaviour will have to improve,  
I agree and say ?place him on a Management Behaviour  
Program? (laughing) and he says ? it?s not good when Frank (Dan?s  
Aide) is asking him to go into class and Daniel is bolting out of the  
school gates and that has to change?.  I swear if you weren?t  
listening carefully you would have thought he was serious.  He then  
tells me he?s put all the paper work through and it?s been approved  
by the education department.  We are still feeling a bit shocked and  
stunned but absolutely thrilled with the outcome.

Another nice story, we have been trying to get Daniel into a Work  
Placement with no luck to date.  One of the things we have been  
thinking about is him supporting a teacher in a school and thought  
his old school would be the place to start as we still know quite a  
few people working there.  The Coordinator phoned me last week to let  
me know he?s been given a position with his old year 7 teacher to  
work as an aide beginning next week.  If will be for 5 weeks with a  
possibility of it continuing.  This type of job fits so well with  
Daniel and his personality so am very much hoping it will be successful.

On Wednesday night we will be having Dan?s first Microboard Meeting  
so feeling a tad nervous, there?s something about inviting people  
into our lives that leaves us feeling a bit vulnerable ? will they  
come, if they do will they want to be a part of supporting Dan to  
continue being included in our community, will they walk the talk!!   
I want to change the pinwheel model in that it?s me at the centre  
organising everything to something that looks much messier with lots  
of people organising stuff around Dan ? does that make sense?  I will  
soon find out if it?s realistic to achieve and if so will be so much  
better for Dan and me.

I hope everyone is well and keeping the flu?s at bay.
Jo

Click Here View photos of singles in your area

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From familyvoices at inpress.pledgonline.com  Wed Jun 17 21:08:12 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Thu, 18 Jun 2009 14:08:12 +1000
Subject: FV: Hi from Jo
In-Reply-To: <8AC72F6C-FFD5-4600-A191-2A7E4481A468@include.com.au>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au>
	<701423EF02784E27809819C914E46EE3@hp>
	<000601c9eee8$3d69d860$b83d8920$@net.au>
	<8AC72F6C-FFD5-4600-A191-2A7E4481A468@include.com.au>
Message-ID: <C7874FBB-62A2-4BA6-9EF3-3304696EB39E@bigpond.com>

Hi Al

That sounds very exciting if not a little nerve wracking - looking  
forward to hearing your updates.

Here's the Transcript of the Program Bob mentioned in a pdf file for  
you (and anyone else).
?

Thanks Bob for bringing it to our attention.

Regards

Gina
Mother of the iPhone using six year old (what else does a six year  
old get for their birthday these days) who is planning on changing  
the NSW DET curriculum to be readily available on ubiquitous objects  
- can't imagine that will be too big a job :-)
Had a great brainstorming meeting with Mac's teacher last night for 3  
hours where we just looked at different options/adaptions/ 
modifications and how they could be incorporated into the day - very  
useful.
And looks like I might get the call up to speak about the importance  
of inclusion from birth at the ECIA conference - all going well.



On 18/06/2009, at 12:58 PM, Family Voices wrote:

> Hi Al
> There was an Australian Story video on 'Claire goes to College'  
> that showed a country girl going to boarding school.  I have a copy  
> that I could send up via Darrell if you like.  Need it back  
> sometime as I use it for teaching.
>
> Bob
> ----------------------------------------------------------
> Bob Jackson PhD
> Psychologist
> Adjunct Associate Professor of Education
> Edith Cowan University
>
> Include Pty Ltd
> 21 Anembo road
> Carmel  WA  6076
> Phone:       61-8-92935302
> Mobile:  0407667108
> www.include.com.au
> ----------------------------------------------
>
>
>
> On 17/06/2009, at 9:09 AM, Family Voices wrote:
>
> Hi There Al,
> Wonderful to hear from you.  Wow, I am still absorbing the  
> possibility of Elliot going to boarding school, how amazing would  
> that be.  I hope you get some responses from people as it will be  
> so interesting to learn how they went about it.   I haven?t heard  
> of anyone doing it but being a city gal and not having anything to  
> do with boarding schools down here it doesn?t put me in that area.
>
> I?ll be thinking of you all next week talking about all this stuff  
> and hope you?ll have the time to let us know how it goes.  I am so  
> with you on the scary bit, and  exciting at the same time wondering  
> where all these discussions and actions will take us and thrilled  
> to be sharing with likeminded people.
>
> I feel like I?m getting to know Sharon and Elliot through you so  
> please say hi to them for me.  Are they coming down in August too?
> Jo
>
> From: familyvoices-bounces at inpress.pledgonline.com  
> [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of  
> Family Voices
> Sent: Wednesday, 17 June 2009 5:26 AM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Hi from Jo
>
> Hi Jo
> It is great to read what you are up to. I know what you meant about  
> the library teacher it, and how much impact those few kind words have.
> Sharon and myself are puting together a similar evening with  
> friends next week. Darrell will be joining us aswell for a few days  
> to disscus the
> possibility of Elliot going to an Ag school next year. Scarry stuff  
> as the closest Ag school is 4000 km away. has anybody had any  
> experience
> with there kids in an Ag school boarding situation. would love to  
> here positive or negative.
> I still dont know what date  I will be in Perth but would love to  
> catch up .about mid August.
> Cheers Al Mason----- Original Message -----
> From: Family Voices
> To: familyvoices at inpress.pledgonline.com
> Sent: Tuesday, June 16, 2009 8:08 PM
> Subject: Re: FV: Hi from Jo
>
> Thats so awesome Jo! You made my night!!!
>
> Jaquie xx
>
> From: familyvoices-bounces at inpress.pledgonline.com  
> [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of  
> Family Voices
> Sent: Tuesday, 16 June 2009 6:18 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Hi from Jo
>
> Thanks Maureen, he had a great day today with everyone thrilled to  
> see him again.  Frank said it will be better next week in regard to  
> him helping the teacher now that they have a few ideas so here?s  
> hoping.  I walked Dan home from the school and as we passed the  
> teachers car park his old library teacher stopped and yelled out  
> ?Dan came to my library to see me today?, she had genuine warmth  
> and excitement in her voice ? wonderful for me to hear.  Give me a  
> few days to get over this hive of activity and I?ll sit down doing  
> some reflections on how tomorrow night goes.
>
> It?s so lovely to hear from you, hoping all is going well over  
> your way,
> Jo
>
> From: familyvoices-bounces at inpress.pledgonline.com  
> [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of  
> Family Voices
> Sent: Tuesday, 16 June 2009 1:51 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Hi from Jo
>
> Look forward to hearing how it all goes Jo, both with Dan's work  
> placement and your circles meeting.
> Maureen
> ----- Original Message -----
> From: Family Voices
> To: familyvoices at inpress.pledgonline.com
> Sent: Tuesday, June 16, 2009 11:14 AM
> Subject: Re: FV: Hi from Jo
>
> Thanks everyone, it was lovely to hear from you all.
>
> Yes Miriam, I would love to drop in for a cuppa and chat, to meet  
> Rachel and to share ? who knows who?ll be drifting into town for  
> the odd catch up and although this isn?t quite the same still a  
> great way to stay in touch.  I can so understand your nervousness  
> and I am in awe of people who can go onto stage with all that  
> confidence.  Please pass on my congratulations to Rachel on all her  
> hard work and wishing you both a fabulous trip.   When do you get  
> back?
>
> Anita, your description of not holding on too tightly and knowing  
> when to let go is the one I struggle with constantly, if you have  
> any tips to share would love to hear them.  When did you start  
> Warren?s circle of support and did you develop it yourself or use  
> a model from somewhere,  have you been challenged with any radical  
> suggestions and if so, how did you manage it.  Hope you don?t mind  
> all these questions but another one is, do you think the circle  
> would be self sustaining if you were not involved ? this is my aim  
> for Dan?s support and would love to hear your thoughts.
>
> I have just dropped Dan off to his Work Placement, everyone was  
> very warm and welcoming.  He so knew something was up this morning,  
> wearing spiffy clothes (not the usual school uniform) and I had  
> been telling him he was going to his old school to support the  
> teacher, he was talking to me nonstop and pulling everything off  
> the table and bench tops (I wasn?t enjoying that bit) but think it  
> was to do with some nervousness on his part.
>
> One more sleep and we have our evening with friends, will give you  
> some feedback on how the night goes.
> Jo
>
> From: familyvoices-bounces at inpress.pledgonline.com  
> [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of  
> Family Voices
> Sent: Sunday, 14 June 2009 10:31 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Hi from Jo
>
> Hi Jo "All Good" and well done in the Nunn household you all  
> deserve lots of praise.
> What a shame distances are so great and we are not in to flitting  
> around the country and visiting each other. Clearly we all have so  
> much Knowledge and warm feelings to share. In the High household we  
> are getting ready for the Ireland journey. We are so pleased how  
> hard Rachel has worked on her presentation and how confident she is  
> feeling. I think it is mum who will be sitting on the side lines  
> who will be the most nervous .
> My warmest wishes to you all Miriam
>
>
> To: familyvoices at inpress.pledgonline.com
> Date: Sun, 14 Jun 2009 09:10:46 +0800
> From: familyvoices at inpress.pledgonline.com
> Subject: FV: Hi from Jo
>
> Hi There Everyone,
>
> Just an update from the Nunn household and keeping in touch.
>
> You may remember me hinting at some Education stuff I wasn?t  
> looking forward to tackling ? well last week was the week that we  
> had the meeting.  In WA we are allowed to apply for a 13th year for  
> our children to attend school, we had decided we wanted Daniel to  
> attend an additional year if possible.  Problem was our principal  
> we had a good relationship with and who I know would have supported  
> us moved on in 3rd term 2008.  The acting principal was the deputy  
> who immediately set about trying to get Daniel out of the school at  
> the end of last year ? we won that one and he returned to the  
> school this year.  Anyhow, anyhow, anyhow, the new principal came  
> on board this term and I was convinced that the deputy (who was the  
> acting principal) would have had a major influence in whether or  
> not Dan could do a 13th year and I was feeling that we wouldn?t  
> get a hearing as to why we felt the need for Dan to continue on for  
> the additional year.  However, off we trot, put our case forward ?  
> he says ?do you want the short answer or the long answer?, I  
> sometimes just don?t know when to keep my mouth shut so add a few  
> more points ? really just repeating what I?d already said, when  
> I finally stop he says ?yes?, well, I?m gobsmacked and say in  
> the most intelligent way ?what?, he then say?s ?there is a  
> condition? ( so, I am thinking this was just too easy) when he  
> adds ?his behaviour will have to improve, I agree and say ?place  
> him on a Management Behaviour Program? (laughing) and he says ?  
> it?s not good when Frank (Dan?s Aide) is asking him to go into  
> class and Daniel is bolting out of the school gates and that has to  
> change?.  I swear if you weren?t listening carefully you would  
> have thought he was serious.  He then tells me he?s put all the  
> paper work through and it?s been approved by the education  
> department.  We are still feeling a bit shocked and stunned but  
> absolutely thrilled with the outcome.
>
> Another nice story, we have been trying to get Daniel into a Work  
> Placement with no luck to date.  One of the things we have been  
> thinking about is him supporting a teacher in a school and thought  
> his old school would be the place to start as we still know quite a  
> few people working there.  The Coordinator phoned me last week to  
> let me know he?s been given a position with his old year 7 teacher  
> to work as an aide beginning next week.  If will be for 5 weeks  
> with a possibility of it continuing.  This type of job fits so well  
> with Daniel and his personality so am very much hoping it will be  
> successful.
>
> On Wednesday night we will be having Dan?s first Microboard  
> Meeting so feeling a tad nervous, there?s something about inviting  
> people into our lives that leaves us feeling a bit vulnerable ?  
> will they come, if they do will they want to be a part of  
> supporting Dan to continue being included in our community, will  
> they walk the talk!!  I want to change the pinwheel model in that  
> it?s me at the centre organising everything to something that  
> looks much messier with lots of people organising stuff around Dan  
> ? does that make sense?  I will soon find out if it?s realistic  
> to achieve and if so will be so much better for Dan and me.
>
> I hope everyone is well and keeping the flu?s at bay.
> Jo
>
> Click Here View photos of singles in your area
>

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From familyvoices at inpress.pledgonline.com  Wed Jun 17 22:50:40 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Thu, 18 Jun 2009 15:50:40 +1000
Subject: FV:  Hi from Jo *Al Mason
Message-ID: <7tpfp5$b9je2a@ipmail01.adl6.internode.on.net>

 
Hi Al
 
That sounds very exciting if not a little nerve wracking - looking forward
to hearing your updates.
 
Here's the Transcript of the Program Bob mentioned in a pdf file for you
(and anyone else).
 
Thanks Bob for bringing it to our attention.
 
Regards
 
Gina
*         Mother of the iPhone toting six year old (what else does a six
year old get for their birthday these days) who is planning on changing the
NSW DET curriculum to be readily available on ubiquitous objects - can't
imagine that will be too big a job :-)
 
*         Had a great brainstorming meeting with Mac's teacher last night
for 3 hours where we just looked at different
options/adaptions/modifications and how they could be incorporated into the
day - very useful.
 
*         And looks like I might get the call up to speak about the
importance of inclusion from birth at the ECIA conference - all going well.




  _____  

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From familyvoices at inpress.pledgonline.com  Thu Jun 18 01:22:33 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Thu, 18 Jun 2009 20:22:33 +1200 (NZST)
Subject: FV: Hi from Jo *Al Mason
In-Reply-To: <7tpfp5$b9je2a@ipmail01.adl6.internode.on.net>
References: <7tpfp5$b9je2a@ipmail01.adl6.internode.on.net>
Message-ID: <49495.60.234.222.237.1245313353.squirrel@mail.orcon.net.nz>

> Gina,

To me personally you are an inspiration, i take strength and courage from
your emails.  James has had a shocking start to school, he is clearly not
wanted and i find it hard that the school see the disability before the
child......why......

great to hear about the lengthy meeting, some good will surely come out of
this.

Be strong

Francesca


> Hi Al
>
> That sounds very exciting if not a little nerve wracking - looking forward
> to hearing your updates.
>
> Here's the Transcript of the Program Bob mentioned in a pdf file for you
> (and anyone else).
>
> Thanks Bob for bringing it to our attention.
>
> Regards
>
> Gina
> *         Mother of the iPhone toting six year old (what else does a six
> year old get for their birthday these days) who is planning on changing
> the
> NSW DET curriculum to be readily available on ubiquitous objects - can't
> imagine that will be too big a job :-)
>
> *         Had a great brainstorming meeting with Mac's teacher last night
> for 3 hours where we just looked at different
> options/adaptions/modifications and how they could be incorporated into
> the
> day - very useful.
>
> *         And looks like I might get the call up to speak about the
> importance of inclusion from birth at the ECIA conference - all going
> well.
>
>
>
>
>   _____
>
> I am using the Free version of SPAMfighter
> <http://www.spamfighter.com/len>
> ..
> We are a community of 6 million users fighting spam.
> SPAMfighter has removed 1728 of my spam emails to date.
> The Professional version does not have this message.
>
>




From familyvoices at inpress.pledgonline.com  Thu Jun 18 06:17:54 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Thu, 18 Jun 2009 23:17:54 +1000
Subject: FV: Hi from Jo *Francesca
In-Reply-To: <49495.60.234.222.237.1245313353.squirrel@mail.orcon.net.nz>
Message-ID: <7tpfp5$b9qoth@ipmail01.adl6.internode.on.net>

Francesca

Good to hear from you but sorry to hear James' start at school hasn't been
so great.  Ugh, I just 'don't get it sometimes'.  

Mac's teacher for this term and next is a 'fresh out of uni' teacher so it
is great for her and me that we can just 'get on the same page' and build up
a relationship outside that of the process I am working through with the
Principal.

>From my perspective it is getting the teachers to feel confident they KNOW
how to educate, not get bamboozled by the DISABILITY and learn how to IGNORE
many of the silly/useless/irrational/over complicated... suggestions by the
so called experts (ie itinerant support teachers with no idea, or DET people
who still think the best place for kids "like Mac" is in the support classes
or schools where the expertise lies).  Once they can see that I am prepared
to question what the 'experts' tell them and ask what the learning outcome
would be of putting a "foot spa" (yes, electricity/water/21 five and six
year olds) in the classroom I think they finally see that I do not expect
them to do ridiculous stuff and that I am actually on their side trying to
make their life easier not harder.  I just keep reinforcing that I want them
to know I believe they should be in control of the classroom not delegating
Mac's responsibility to the aides, keep reminding them they know how to
teach, they have that expertise, with Mac it is just breaking it down to
some really basic elements and then working out how/where they can be
achieved.  

Hang in there, it is worth the battle I am sure - but bloody tiring already
- sheesh we only have 12.5years to go of school then 40+ years post school
:-)

I ran into a girl I know yesterday (step daughter of an Uncle of mine) and
she has just received a letter from the Early Intervention Support
Pre-school class telling her that her child should go to the special school
and he can't attend a public or private school.  She was shattered.  I have
at least set her straight on the legal aspects and we will catch up and have
a proper read of the letter but boy oh boy that frustrates me to hear these
types of documents are being sent out.  

Take care and great to hear from you.

Gina


Gina Wilson-Burns
110a FLANNERY LANE, TAPITALLEE? NSW? 2540
TELEPHONE : 0412 022014? or? 02 44460037
EMAIL: sandgburns at bigpond.com


-----Original Message-----
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Thursday, 18 June 2009 6:23 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo *Al Mason

> Gina,

To me personally you are an inspiration, i take strength and courage from
your emails.  James has had a shocking start to school, he is clearly not
wanted and i find it hard that the school see the disability before the
child......why......

great to hear about the lengthy meeting, some good will surely come out of
this.

Be strong

Francesca


> Hi Al
>
> That sounds very exciting if not a little nerve wracking - looking forward
> to hearing your updates.
>
> Here's the Transcript of the Program Bob mentioned in a pdf file for you
> (and anyone else).
>
> Thanks Bob for bringing it to our attention.
>
> Regards
>
> Gina
> *         Mother of the iPhone toting six year old (what else does a six
> year old get for their birthday these days) who is planning on changing
> the
> NSW DET curriculum to be readily available on ubiquitous objects - can't
> imagine that will be too big a job :-)
>
> *         Had a great brainstorming meeting with Mac's teacher last night
> for 3 hours where we just looked at different
> options/adaptions/modifications and how they could be incorporated into
> the
> day - very useful.
>
> *         And looks like I might get the call up to speak about the
> importance of inclusion from birth at the ECIA conference - all going
> well.
>
>
>
>
>   _____
>
> I am using the Free version of SPAMfighter
> <http://www.spamfighter.com/len>
> ..
> We are a community of 6 million users fighting spam.
> SPAMfighter has removed 1728 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 1728 of my spam emails to date.
Get the free SPAMfighter here: http://www.spamfighter.com/len

The Professional version does not have this message



From familyvoices at inpress.pledgonline.com  Thu Jun 18 17:01:51 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 19 Jun 2009 10:01:51 +1000
Subject: FV: Hi from Jo
In-Reply-To: <004b01c9ee7b$235a2c30$6a0e8490$@net.au>
Message-ID: <003001c9f071$26c7d190$c600a8c0@ANITA>

Will pen my thoughts re our Circle and answer your questions as soon as
possible.  More changes with my mother-in-law's care - bringing her home
from hospital today and she needs much more care, so after shifting her
to an ILU end Jan this year, now its hostel respite, and hostel, with
all the emotions and grief she is feeling.
 
Anyway will get back to you soon!

J

Anita O'Brien

 

 

-----Original Message-----
From: Family Voices [mailto:familyvoices at inpress.pledgonline.com] 
Sent: Tuesday, 16 June 2009 10:08 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo



Thats so awesome Jo! You made my night!!!

 

Jaquie xx

 ,

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Tuesday, 16 June 2009 6:18 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Thanks Maureen, he had a great day today with everyone thrilled to see
him again.  Frank said it will be better next week in regard to him
helping the teacher now that they have a few ideas so here's hoping.  I
walked Dan home from the school and as we passed the teachers car park
his old library teacher stopped and yelled out "Dan came to my library
to see me today", she had genuine warmth and excitement in her voice -
wonderful for me to hear.  Give me a few days to get over this hive of
activity and I'll sit down doing some reflections on how tomorrow night
goes.  

 

It's so lovely to hear from you, hoping all is going well over your way,

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Tuesday, 16 June 2009 1:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Look forward to hearing how it all goes Jo, both with Dan's work
placement and your circles meeting.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 11:14 AM

Subject: Re: FV: Hi from Jo

 

Thanks everyone, it was lovely to hear from you all.  

 

Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel
and to share - who knows who'll be drifting into town for the odd catch
up and although this isn't quite the same still a great way to stay in
touch.  I can so understand your nervousness and I am in awe of people
who can go onto stage with all that confidence.  Please pass on my
congratulations to Rachel on all her hard work and wishing you both a
fabulous trip.   When do you get back?

 

Anita, your description of not holding on too tightly and knowing when
to let go is the one I struggle with constantly, if you have any tips to
share would love to hear them.  When did you start Warren's circle of
support and did you develop it yourself or use a model from somewhere,
have you been challenged with any radical suggestions and if so, how did
you manage it.  Hope you don't mind all these questions but another one
is, do you think the circle would be self sustaining if you were not
involved - this is my aim for Dan's support and would love to hear your
thoughts.

 

I have just dropped Dan off to his Work Placement, everyone was very
warm and welcoming.  He so knew something was up this morning, wearing
spiffy clothes (not the usual school uniform) and I had been telling him
he was going to his old school to support the teacher, he was talking to
me nonstop and pulling everything off the table and bench tops (I wasn't
enjoying that bit) but think it was to do with some nervousness on his
part.

 

One more sleep and we have our evening with friends, will give you some
feedback on how the night goes.

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo "All Good" and well done in the Nunn household you all deserve
lots of praise.
What a shame distances are so great and we are not in to flitting around
the country and visiting each other. Clearly we all have so much
Knowledge and warm feelings to share. In the High household we are
getting ready for the Ireland journey. We are so pleased how hard Rachel
has worked on her presentation and how confident she is feeling. I think
it is mum who will be sitting on the side lines who will be the most
nervous .
My warmest wishes to you all Miriam


  _____  



To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo

Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking
forward to tackling - well last week was the week that we had the
meeting.  In WA we are allowed to apply for a 13th year for our children
to attend school, we had decided we wanted Daniel to attend an
additional year if possible.  Problem was our principal we had a good
relationship with and who I know would have supported us moved on in 3rd
term 2008.  The acting principal was the deputy who immediately set
about trying to get Daniel out of the school at the end of last year -
we won that one and he returned to the school this year.  Anyhow,
anyhow, anyhow, the new principal came on board this term and I was
convinced that the deputy (who was the acting principal) would have had
a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for
Dan to continue on for the additional year.  However, off we trot, put
our case forward - he says "do you want the short answer or the long
answer", I sometimes just don't know when to keep my mouth shut so add a
few more points - really just repeating what I'd already said, when I
finally stop he says "yes", well, I'm gobsmacked and say in the most
intelligent way "what", he then say's "there is a condition" ( so, I am
thinking this was just too easy) when he adds "his behaviour will have
to improve, I agree and say "place him on a Management Behaviour
Program" (laughing) and he says " it's not good when Frank (Dan's Aide)
is asking him to go into class and Daniel is bolting out of the school
gates and that has to change".  I swear if you weren't listening
carefully you would have thought he was serious.  He then tells me he's
put all the paper work through and it's been approved by the education
department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work
Placement with no luck to date.  One of the things we have been thinking
about is him supporting a teacher in a school and thought his old school
would be the place to start as we still know quite a few people working
there.  The Coordinator phoned me last week to let me know he's been
given a position with his old year 7 teacher to work as an aide
beginning next week.  If will be for 5 weeks with a possibility of it
continuing.  This type of job fits so well with Daniel and his
personality so am very much hoping it will be successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they
do will they want to be a part of supporting Dan to continue being
included in our community, will they walk the talk!!  I want to change
the pinwheel model in that it's me at the centre organising everything
to something that looks much messier with lots of people organising
stuff around Dan - does that make sense?  I will soon find out if it's
realistic to achieve and if so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay.  

Jo

 


  _____  


Click Here View photos of singles in your
<http://dating.ninemsn.com.au/search/search.aspx?exec=go&tp=q&gc=2&tr=1&
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From familyvoices at inpress.pledgonline.com  Fri Jun 19 17:13:48 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 20 Jun 2009 10:13:48 +1000
Subject: FV: To Miriam from Maureen
References: <7tpfp5$b9je2a@ipmail01.adl6.internode.on.net>
Message-ID: <D1E8C19EB7744AE8BBAF93392ACD33C6@D8XYGK1S>

Hi Miriam
When we first started Family Voices, you kindly sent your spread sheet for your daughters support and routine. I was most impressed with this and thought I saved it and now can't locate it. I am wondering if you would re send it to me? I would be most grateful. I am working on Lauren's on going support as we as a family, think through how we will support her in the future. I would be most grateful Miriam.
With thanks
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Thursday, June 18, 2009 3:50 PM
  Subject: FV: Hi from Jo *Al Mason


   

  Hi Al

   

  That sounds very exciting if not a little nerve wracking - looking forward to hearing your updates.

   

  Here's the Transcript of the Program Bob mentioned in a pdf file for you (and anyone else).

   

  Thanks Bob for bringing it to our attention.

   

  Regards

   

  Gina

  ?         Mother of the iPhone toting six year old (what else does a six year old get for their birthday these days) who is planning on changing the NSW DET curriculum to be readily available on ubiquitous objects - can't imagine that will be too big a job :-)

   

  ?         Had a great brainstorming meeting with Mac's teacher last night for 3 hours where we just looked at different options/adaptions/modifications and how they could be incorporated into the day - very useful.

   

  ?         And looks like I might get the call up to speak about the importance of inclusion from birth at the ECIA conference - all going well.







------------------------------------------------------------------------------
  I am using the Free version of SPAMfighter.
  We are a community of 6 million users fighting spam.
  SPAMfighter has removed 1728 of my spam emails to date.
  The Professional version does not have this message.
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From familyvoices at inpress.pledgonline.com  Sat Jun 20 01:22:37 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 20 Jun 2009 17:52:37 +0930
Subject: FV: To Miriam from Maureen
In-Reply-To: <D1E8C19EB7744AE8BBAF93392ACD33C6@D8XYGK1S>
References: <7tpfp5$b9je2a@ipmail01.adl6.internode.on.net>
	<D1E8C19EB7744AE8BBAF93392ACD33C6@D8XYGK1S>
Message-ID: <COL117-W16134D6F515C2D3CC1FDC4D23B0@phx.gbl>


Hello Maureen this is the email I originally sent to Jane. Is this what you were thinking about ? I must repeat how useful we have found it to be It made us sit still for a while and think things through. The future is all a bit scary and I have to admit we do seem to live in a never never land thinking things will always be the same as they are today. This brought a bit of reality to us and that was good. Take care, I enjoy keep hearing everyones news. and send my warmest wishes Miriam




To: familyvoices at inpress.pledgonline.com
Date: Fri, 1 May 2009 18:22:56 +0930
From: familyvoices at inpress.pledgonline.com
Subject: FV: Jane 48 hour plan







  



To the 48 Hour plan. Firstly I must tell you it was the brain child of a lady named Fiona Munro and I would be grateful if you could acknowledge her if you pass it on to others. It was devised for older parents who for obvious reasons were well aware of the need to pass on vital information about their dependant son or daughter to others if the need should suddenly arise.
 
There are three parts to this plan  
 The first is a picture book made up of Photos of Rachel doing things she enjoys , her family her work her daily activates and her animals, Some places she like to go and Holidays she has been on.
We collected these together and in conversation about them she wrote a few words about each one.
The purpose of part one is so that a stranger who may need to take over in an emergency might be introduced to Rachel and so discover things in her life she could relate to and share with them
 
Part two is the 48 hour plan, as you will see this gathers together much of the vital information which is essential for the immediate and ongoing support of Rachel?s daily program. The questions I think are self explanatory, but most of which Rachel might not be able to remember or know where to find.
 
Part Three (not Attached) is a summary of what is mostly in my brain alone, all the background of her general health needs , the names of Doctors the times seen and current progress.
We were so aware that much of this information is passed from doctors to parents, which is then not really shared. Also we are aware that much information is still kept in the filing cabinets of the various medicos?. We have made it a practice of requesting all reports of assessments and examinations. This document will tell where these are kept and which specialists are currently involved 
 
 

 


To: familyvoices at inpress.pledgonline.com
Date: Sat, 20 Jun 2009 10:13:48 +1000
From: familyvoices at inpress.pledgonline.com
Subject: FV: To Miriam from Maureen




Hi Miriam
When we first started Family Voices, you kindly sent your spread sheet for your daughters support and routine. I was most impressed with this and thought I saved it and now can't locate it. I am wondering if you would re send it to me? I would be most grateful. I am working on Lauren's on going support as we as a family, think through how we will support her in the future. I would be most grateful Miriam.
With thanks
Maureen
 
_________________________________________________________________
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From familyvoices at inpress.pledgonline.com  Sat Jun 20 01:40:33 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 20 Jun 2009 18:40:33 +1000
Subject: FV: To Miriam from Maureen
References: <7tpfp5$b9je2a@ipmail01.adl6.internode.on.net><D1E8C19EB7744AE8BBAF93392ACD33C6@D8XYGK1S>
	<COL117-W16134D6F515C2D3CC1FDC4D23B0@phx.gbl>
Message-ID: <3655BC565726446B940D3EBBBA08DDFC@D8XYGK1S>

I am most grateful Miriam.
I will acknowledge all contributors as I would like to pass it on to my friend Cheryl Simpson, who is going through the same process as we are.
So, many thanks and best wishes for your trip with Rachel to Ireland. 
Cheers
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Saturday, June 20, 2009 6:22 PM
  Subject: Re: FV: To Miriam from Maureen


  Hello Maureen this is the email I originally sent to Jane. Is this what you were thinking about ? I must repeat how useful we have found it to be It made us sit still for a while and think things through. The future is all a bit scary and I have to admit we do seem to live in a never never land thinking things will always be the same as they are today. This brought a bit of reality to us and that was good. Take care, I enjoy keep hearing everyones news. and send my warmest wishes Miriam


------------------------------------------------------------------------------
  To: familyvoices at inpress.pledgonline.com
  Date: Fri, 1 May 2009 18:22:56 +0930
  From: familyvoices at inpress.pledgonline.com
  Subject: FV: Jane 48 hour plan





    


  To the 48 Hour plan. Firstly I must tell you it was the brain child of a lady named Fiona Munro and I would be grateful if you could acknowledge her if you pass it on to others. It was devised for older parents who for obvious reasons were well aware of the need to pass on vital information about their dependant son or daughter to others if the need should suddenly arise.



  There are three parts to this plan  

   The first is a picture book made up of Photos of Rachel doing things she enjoys , her family her work her daily activates and her animals, Some places she like to go and Holidays she has been on.

  We collected these together and in conversation about them she wrote a few words about each one.

  The purpose of part one is so that a stranger who may need to take over in an emergency might be introduced to Rachel and so discover things in her life she could relate to and share with them



  Part two is the 48 hour plan, as you will see this gathers together much of the vital information which is essential for the immediate and ongoing support of Rachel?s daily program. The questions I think are self explanatory, but most of which Rachel might not be able to remember or know where to find.



  Part Three (not Attached) is a summary of what is mostly in my brain alone, all the background of her general health needs , the names of Doctors the times seen and current progress.

  We were so aware that much of this information is passed from doctors to parents, which is then not really shared. Also we are aware that much information is still kept in the filing cabinets of the various medicos?. We have made it a practice of requesting all reports of assessments and examinations. This document will tell where these are kept and which specialists are currently involved 






   

------------------------------------------------------------------------------
  To: familyvoices at inpress.pledgonline.com
  Date: Sat, 20 Jun 2009 10:13:48 +1000
  From: familyvoices at inpress.pledgonline.com
  Subject: FV: To Miriam from Maureen


  Hi Miriam
  When we first started Family Voices, you kindly sent your spread sheet for your daughters support and routine. I was most impressed with this and thought I saved it and now can't locate it. I am wondering if you would re send it to me? I would be most grateful. I am working on Lauren's on going support as we as a family, think through how we will support her in the future. I would be most grateful Miriam.
  With thanks
  Maureen



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From familyvoices at inpress.pledgonline.com  Mon Jun 22 00:30:43 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 22 Jun 2009 17:30:43 +1000
Subject: FV: techno information
In-Reply-To: <4A32CCBB.7070207@internode.on.net>
References: <55F2F2E5867848349F430013C155CA68@dell91>	<7sroog$bnqo07@ipmail05.adl2.internode.on.net><3C0DD76116054509B338113903BEF59B@dell91>
	<4A32CCBB.7070207@internode.on.net>
Message-ID: <6B0F5E34B3F8431191440169F2DA4187@dell91>

Thanks Todd

Yes I have learnt more.  I could charge ipod on any persons computer.  Have
also learnt that they can freeze spoke with apple and fantastic help.

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: Saturday, June 13, 2009 7:47 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: techno information

 

Hi Jane,

I am no expert on iPods etc but I think you can plug the iPod into any
computer through a USB port (cables provided with your iPod). I don't know
about the iPhone but would think the same. This gives them a source of
power. BUT if the program iTunes is not already on that computer it will
probably try to get you to load it when you plug the iPod in and I imagine
for the iPhone it would want iTunes and some other program that relates to
the iPhone loaded as well. If you go to the iTunes site on the web you will
probably find some info in the frequently asked questions section.

If any computer you are connected to has the iTunes program installed
(program is free and downloaded from the net) then you can access your
iTunes account.

Regards,

Todd.

Family Voices wrote: 

Hi FVs
 
Does anyone know if you can link your iphone/ipod to any computer to charge?
 
And or can you get into your itune account off any computer.
 
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: Monday, June 01, 2009 6:45 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: techno information
 
HI Jane
I will have a fiddle with ours to see what we are doing differently and if I
can work anything out.
 
We have Shawn's computer set up for his, Mac's, Cousin Alex, Cousin Lucy and
Friend Jordan's ipods but think at the moment we get everyone's music on all
of them unless we pick and choose specific playlists to sync.
 
Maybe it needs to be done as a manual copy of playlists rather than a sync -
I'll get back to you.
Gina
 
 
-----Original Message-----
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, 1 June 2009 6:38 PM
To: familyvoices at inpress.pledgonline.com
Subject: FV: techno information
 
 
Hello all
 
Can anyone tell me how I download off two itunes sites?  I have registered
Sarah's ipod (I think) to a I tunes site and my son has a itunes as well.
When I go to his and download his music it wipes out the stuff I have set up
on other.
 
Still haven't worked out proloque2go program.
 
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: Saturday, May 30, 2009 4:05 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Facilitated communicaton
 
It would do this and sort them but you have to change the header
(subject) of each positing to keep the thread the same.
 
 
 
 
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Friday, 29 May 2009 7:35 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Facilitated communicaton
 
 
 
Hi all
 
 
 
Brenda I have just come in have not really caught up with the thread but
am also interested in the conversations re FC.  I have to go away this
weekend, away from family voices  I am now printing off madly to show
some of the wonderful words of wisdom.
 
 
 
Right now I have a bit of headache so bit fuzzy but I have a thought in
my head that we are not tracking the conversations so well.  Is there
anyone out there with out a fuzzy head who can think of a simple way to
have threads in line???
 
Gina I have done the rule thing which is great another thing you have
taught me but could we do something like that with subjects of
conversations.
 
 
 
Family voices is one of the most powerful things in my world at the
moment, the sharing, knowledge, understanding is priceless.
 
Hug to all
 
 
 
Ps Hearing what you are saying Meg.  Was the house offer your new one or
old one.  Keep riding that rollercoaster girlfriend and hang on!!!
 
 
 
Jane Warner/Hudson
 
 
 
07 46714737
 
 
 
________________________________
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Thursday, May 28, 2009 11:26 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?
 
 
 
Hallo everyone,
 
 
 
I am a parent of a son who had a head injury many years ago and did not
come up through the child raising times and so I find your conversation
very enlightening.  I now have a problem. I am travelling in Canada,
using other people's computers, and wanted to forward the conversations
about Facilitated Communication to someone I met this week. However,
somehow I lost it. Would someone please forward those particular
conversations to me again so that I may send them on to her.
 
 
 
Regards,
 
 
 
Brenda
 
On Wed, May 27, 2009 at 8:10 PM, Family Voices
 <mailto:familyvoices at inpress.pledgonline.com>
<familyvoices at inpress.pledgonline.com> wrote:
 
Another aspect of this we have faced is the absolutely IMPLICIT
'dependence learning' that is done through the very act of having
support workers. This is so deep in Matthew, and I feel quite certain at
this stage that this is an inherent aspect of the 'support worker'
model. Matthew turns to the person he is with and puts his hand to his
mouth (a morph of the drink/eat sign). This sign is a decision-making
sign and one that he initiates. It's fabulous that he initiates it
(decision-making in practice) but it quickly becomes a handing-over of
power (that he also initiates). It's also the fact that he does it in
the first place. Depending on the context, it variously means
 
 
 
 - tell me what is happening next
 
 - where are we going
 
 - I want something
 
 - who is coming after you bugger off (and are they going to be more
exciting that you my boring sister?!)
 
 
 
As you can see, depending on how you respond you can very easily become
the locus of control.
 
 
 
Why doesn't Matthew make a decision  - eg I want a drink - a go initiate
it? He's capable of this with assistance (this was meant as a
rhetorical/theoretical question). Instead he's learned so subtely and
powerfully over the years that the people who come in to his home are
responsible for this.
 
 
 
I'm using this as an example, not really looking for suggestions here
about others ways Matthew could communicate - we're really working on
this.
 
 
 
I think what I wanted to raise are actually issues around involvement of
paid people/unpaid people - I have seen this as another topic of
discussion here
 
 
 
So much of what families/individuals are conditioned around is the need
for paid support. Families (including ours), leap to it. However we
baulk (including ours), are fearful, worried, don't think it could be
possible etc around the unpaid stuff. We're taught (professional gift
model) that this is what is needed. I look at the self-managed community
participation options in NSW for example, where the work of families
seems very quickly to be around hiring support workers to assist the
young person in their post-school pursuits. It becomes like a vicious
cycle - the more we get caught up in managing the paid system the easier
it is to stay away from the (harder) work of the unpaid stuff. 
 
 
 
I have found in our accommodation agreement/arrangement with Matthew's
service provider that we too get driven by this. His budget is there to
use to hire support workers isn't it? 
 
 
 
It was therefore very interesting to hear Bruce Uditsky from Alberta,
Canada talk at Family Advocacy conference a couple of years ago about
this - their response has been to work on a number of projects that seek
to systemically develop more natural supports. For example their
partnership with Rotary where support on the job is built through
co-workers.
 
 
 
My example above is to talk about the potentially powerful impact of
this on people and their decision-making capacity. There are many things
we can do to help put power back into Matthew's hands, but many of these
are really just fiddling, cos they don't get at the root, which is the
very presence of the person whose job it is 'to help' (no matter how
empowering they are in the practice of this role).
 
 
 
 
 
Libby 
 
_________________________________
 
 
 
 
 
________________________________
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
 
Sent: Wednesday, 27 May 2009 9:51 PM 
 
 
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?
 
 
 
The response we are accustomed to is "I don't know" when she absolutely
does know.  I think this comes from a place of wanting to please, not
wanting to be to told no and also wanting to get the answer right.
Depending on the complexity of the question we now give her ridiculous
options like cat food on toast to push her to articulate her choice or
reframing the question/breaking it down in sequential order to assist
understanding and then decision making.  We are also very aware that if
Jos makes a clear choice that we honor that (as much as we can,
education about good food choices or bed times if very tired etc) even
if it really puts us out otherwise her choice making is really
redundant, leading to more I don't know.  The other aspect is that we
know her well and understand her reluctance to make decisions however if
she were in a service world it would simply move on and make decisions
on her behalf that suited the service not her as a person.  We are
really keen to encourage her independent decision making as she will
need it in the future to maintain her personal independence and protect
her form being, excuse me, fucked around.  It's interesting that what is
a big ask for Jos would be just a natural occurrence for the other kids.
Todd and I are the moderators of this and we try to always be mindful
that our power over her life is much more profound in good ways and also
in not so good if were not careful to keep her interests at the
forefront of our minds.
 
 
 
Megs
 
 
 
Offer on house accepted, meeting with new school held.still thinking,
geriatric dog survived kennel experience (just), eldest child home from
England tomorrow, middle child has new work placement at child care
centre, youngest child 15 on Friday, just like everyone else ...busy,
and it's now winter YUCK !!!!!
 
 
 
________________________________
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Tuesday, 26 May 2009 9:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?
 
 
 
This is all so true...we all fill in the gaps of what we hear with our
own assumptions. We have a terrific service dude here in Perth who works
with the vela families who always reminds us that everyone's default
answer is always 'no'...until we have enough information.
 
 
 
One of eli's friends years ago used to routinely refuse to sleepover. I
assumed, in my wounded heart maternal fashion, for about a year that he
said no because he didn't really want to be around eli that much because
he was too weird. When i got around to asking him, he said...i'm
planning to live with eli when i move out of home but i don't think i am
ready to look after him all by myself yet. This young man was 13`at the
time, and for some reason he had assumed that a sleepover meant me and
Darryl wouldn't be here! We've had many sleepovers since and even now, 4
years later, some. Weekends liam almost lives here.
 
 
 
One strategy we've been using with one family is to build up an image of
adult life using favourite movies and tv shows. We have a young woman at
present with some challenges around adult behaviour, and are using her
favourite tv series 'Friends' to help her to identify adult vs childish
ways of being. So far it has been very successful. I think this process
of developing an adult identity is comlex for all of us.
 
 
 
We've had some awesome help with this from the international men's group
Mankind Project who eli is in the process of joining. I recommend them
from what i have seen so far to anyone with sons who are transitioning
into an adult male identity, but they have been profound and magnificent
in their welcome and inclusion of eli so far. Check out the website:
 
 
 
http://www.mkp.org/ 
 
 
 
Jaquie
 
 
 
 
 
 
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:31 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?
 
 
 
That's really interesting Jill and has really made me think! Quite a
ground breaking thing - so simple yet so easily missed. This has really
made me think about my language and how we assume so much in our
conversations in life
 
 
 
Libby 
 
_________________________________
 
 
 
 
 
________________________________
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
Sent: Monday, 25 May 2009 11:49 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: What is inclusion?
 
Hi Jill, Interesting that the wording was the hold back. I did ask
Lauren if she was lonely and was our home too big for her to manage. But
she just looked at me vaguely and said no. Maybe I should word it
differently. I don't want her to feel she HAS to move away from her
security either. It might take years for us to get to a place where she
lives independently of us, but I feel we have started her thinking she
can do it.
 
When are you going to South America Jill?
 
Maureen
 
        ----- Original Message ----- 
 
        From: Family Voices
 <mailto:familyvoices at inpress.pledgonline.com>
<mailto:familyvoices at inpress.pledgonline.com>  
 
        To: familyvoices at inpress.pledgonline.com 
 
        Sent: Monday, May 25, 2009 11:37 AM
 
        Subject: Re: FV: What is inclusion?
 
         
 
        Hi Maureen 
 
        Great news about Lauren's 'holiday'!  I can relate to it so well
as it was the same for me with Ben when I returned from Canada.    Apart
from his solo experience whilst I was in Canada, I eventually worked out
what was adding to his concern re living independently.  I used to say
to him "wouldn't you like to live by yourself?" or something similar and
just lately twigged that he was taking this literally and thinking that
he would be just in the house by himself with nothing else happening!
When I thought to add that he would still go to work, go out with
friends, visit me etc, his whole attitude changed.  Silly me, thought he
was a mind reader!  Ben has now agreed to having a look at some places
for himself, so we will gradually do some open inspections.  More
holidays on the horizon for you!
 
        Regards
 
        Jill
 
         
 
         
 
        Hello everyone,
 
        Life has been busy here and I have been reading all the
contributions and not participating. Just reading..
 
        "Moving Mum"can be as stressful as thinking about moving our
young ones into places of their own. As I have a 91 y.o. Mum who lives
in an retirement apartment and is very independent, but she can't drive
or attend medical appointments without some assistance and so I (and
others) are always there for her. We are a huge family, and we love
sharing the responsibility of Mum, but for others like Anita, who are
"IT" - the problems can't be shared - there is a huge responsibility.
 
        There is such a close parallel between disability and aged care.
I often see the same issues arise between Mum and Lauren. Age is not the
barrier!
 
         
 
        My good story for the day is..
 
        Murdoch and I went to Hobart for three nights of respite and
golf.. We ate too much and drank too much and went to the casino and the
horse track and generally enjoyed ourselves.
 
        All this was possible because we "bit the bullet"and left Lauren
at home - ALONE!!
 
        I had prepared a few meals in advance. She ordered a Pizza to
share with a friend who came over and stayed on Saturday night. They
took themselves out to brunch on Sunday morning and she managed her life
and recreation very well without us.. We are delighted to tell you we
are
 
        very excited about her independence, but more so, she was so
delighted to see us!!
 
         
 
        Aren't we lucky? To be greeted so lovingly and warmly when we
drove in the garage and her little laughing face was at the door. My
other kids never greet me so welcomingly! She really loves us..That is
so nice. It is so evident even though she just can't bring herself to
mouth the words"I love you Mum and Dad"- We have blessed evidence and
that is so nice for us!
 
         
 
        I hope you are all well
 
        Maureen
 
         
 
               ----- Original Message -----
 
               From: Family Voices
 <mailto:familyvoices at inpress.pledgonline.com>
<mailto:familyvoices at inpress.pledgonline.com> 
 
               To: familyvoices at inpress.pledgonline.com
 
               Sent: Sunday, May 24, 2009 8:13 PM
 
               Subject: Re: FV: What is inclusion?
 
                
 
               Thanks Jaquie . . . I appreciate your thoughts  - I'm
off on a holiday for two weeks so hopefully I'll come back with a
peaceful and clearer mind!
 
                
 
               Cheers!
 
               J
 
               Anita O'Brien
 
               6 Bogong Court
 
               Doncaster East 3109
 
               Ph: 03 9841 8492
 
               Mobile: 0416 064 045
 
               email: anita.obrien at optusnet.com.au
 <mailto:anita.obrien at optusnet.com.au> <mailto:anita.obrien at optusnet.com.au>

 
                       -----Original Message-----
                       From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
                       Sent: Sunday, 24 May 2009 5:28 PM
                       To: familyvoices at inpress.pledgonline.com
                       Subject: Re: FV: What is inclusion?
 
                       Hey Anita
 
                       I just went through this myself.
 
                       I don't really have any sage advice, other than
to say that the microboard model has been extended in North America to
successfully cover situations like this one..ie so folks can be
supported at home. That probably doesn't help you directly as the model
is still so much in development, but is there a way you could use the
circle of friends idea to provide support to your mum in the new
location....these issues we face with our kids are the same we all face
at the times we most need support. Even if your mum needs to live in the
ILU or somewhere with more supported, person centred planning can still
help to make the service provision and her life as close as possible to
what she wants and needs. Also Essential Lifestyle Planning is really
good in this situation.
 
                       I feel for you....it seems a cruel thing that us
parents seem to commonly have to deal with our kids and our parents
transitions at the same time.
 
                       Let me know when you have downloaded Skype!
 
                       Jaquie
 
                       From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
                       Sent: Thursday, 21 May 2009 2:29 PM
                       To: familyvoices at inpress.pledgonline.com
                       Subject: Re: FV: What is inclusion?
 
                       Hi everyone,
 
                       Loved the Kathie Snow statement AnitaS!
 
                       Great story about Dan & Jack, Jo, of what can
happen out there in the community, how Dan was the connector!  These
experiences do keep you going.
 
                       Inclusion for the elderly - don't always want
it.
 
                       I have been spending much time caring for my
88-yr old mother in law, who has shifted unwillingly to an independent
living unit in a retirement village.  She needs quite a lot of support
and we have some in place, but she really needs hostel care or nursing
home.  We tried to make the transition easier for her from home to ILU.
It would have been great for her to stay in her own home and we have
been supporting her to do so for nine years plus, but her vulnerability
is such that we had no choice.     Quite a few people she knows in the
village but up to now she doesn't seem to want to mingle anymore than
she has to.  This situation seems to go against all I believe and work
towards for Warren;  Her choice would be her family home - & hide away.
On top of this we have had a mountain of cleaning up to do to get her
house ready for sale.  If anyone has some sage advice I'm happy to
listen.  
 
                       Thinking about getting on Skype myself - let you
know how I go Jo.
 
                       Warm wishes to everyone!
 
                       xo
 
                       AnitaO
 
                               -----Original Message-----
                               From: Family Voices
[mailto:familyvoices at inpress.pledgonline.com] 
                               Sent: Wednesday, 20 May 2009 10:51 PM
                               To: familyvoices at inpress.pledgonline.com
                               Subject: Re: FV: What is inclusion?
 
                               Wow, I'm worn out thinking about all
that travelling - I hope it'll be for a few weeks.  Yes, it is a small
world and what a great opportunity to catch up with Bruce to maybe get
his reflections.  Go Girl - congratulations Rachel on getting the gig -
I looove Rock n Roll (am I on the right track). 
 
                               I'll get dad to run a copy of the DVD
for you (are you reading this dad?) - not a heap on it but enough to
enjoy and bring back those memories.
 
                               Love Jo
 
                               From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
                               Sent: Wednesday, 20 May 2009 7:05 PM
                               To: familyvoices at inpress.pledgonline.com
                               Subject: Re: FV: What is inclusion?
 
                               Hello Jo Good to hear you and remember
our time at the Ho Down and of course other moments, How did the film
come out. It would be good to see.
                               We are off to Dublin in August and now
not only will Rachel  present a paper she is  being invited to be part
of the demonstration Rock and Roll team. Rather her than me but she
seems happy with the task. there are nine other from the Down Syndrome
group who have been involved for a long time so she has a bit of work to
do. Still they seemed keen to have her after they asked her to go for a
audition. She will also be performing in her two woman show in London so
she is going to be busy. I am looking forward to catching up with
Bridget as she son will both be there, Actually it will be great because
I see from the program that Bruce will also be attending. We might just
have our own little meeting and hear from him how he thought our visit
went. It is a small world really isn't it. We will spend some time with
my sister and her family england and then go to South Africa on the way
home to see my Brothers family.
                               You take care Miriam
 
                               
________________________________
 
 
                               To: familyvoices at inpress.pledgonline.com
                               Date: Wed, 20 May 2009 08:10:02 +0800
                               From:
familyvoices at inpress.pledgonline.com
                               Subject: Re: FV: What is inclusion?
 
                               Thanks Miriam, it's lovely to hear from
you.  When are you off on your trip - must be coming up fast now.  Hope
all is well with you and the family,
 
                               Love Jo
 
                               From:
familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family Voices
                               Sent: Monday, 18 May 2009 7:46 PM
                               To: familyvoices at inpress.pledgonline.com
                               Subject: Re: FV: What is inclusion?
 
                               Hi Jo I loved your happy weekend story.
and the glimpse of you in your home. I hope the education stuff gets
better for you, sadly it is such a long hard journey. You take care my
warmest wishes  Miriam 
                                
                               > To:
familyvoices at inpress.pledgonline.com
                               > Date: Sun, 17 May 2009 18:48:14 +0800
                               > From:
familyvoices at inpress.pledgonline.com
                               > Subject: Re: FV: What is inclusion?
                               > 
                               > Hi Everyone, 
                               > 
                               > It is 5pm West Aussie time and I have
been sitting here with a loooovely
                               > glass of Cab/Sav catching up on the
conversation on FV learning from one of
                               > my favourite sources. 
                               > 
                               > I am feeling pleasantly tired after
being away to a Velor Microboard Weekend
                               > at Fairbridge (just north of Pinjarra)
with another amazing group of people
                               > from all over the state learning more
about inclusion and how to invite
                               > others to be an integral part of our
sons life. While I was learning this
                               > stuff Dan was out having fun on the
flying fox, abseiling, bush walking etc
                               > supported by new friends.....
                               > 
                               > Would like to share this story from
the weekend, Dan and a young man, Jack
                               > connected with one another on
Saturday, I only discovered the connection
                               > this morning when Jack walked by at
breakfast and I saw Dan's arm shoot up
                               > to give him a 'high five', Jack
stopped, said good morning, how are you
                               > mate, had a bit more of a chat and
went off to have brekky. The abseiling
                               > was happening after breakfast and
after some discussion with the Coordinator
                               > she approached Jack to ask if he would
take Dan abseiling which he readily
                               > agreed to. When lunch time came
around, Dan arrived back at the hall with
                               > Steve, minus Jack - I was wondering if
everything went ok and decided to
                               > follow up with him when I could. 15
minutes later he came in and sat down,
                               > I thanked him for helping Dan out and
he said "it's me that will be thanking
                               > Dan", he explained that he had never
abseiled before so prior to taking Dan
                               > up he did a dummy run on his own, then
he went up and down with Dan. After
                               > everyone had had their turn the
instructor offered Jack a weekend job, Jack
                               > said he didn't know much about
abseiling and the response was "if you can
                               > support someone the way you did with
Dan, talking to him all the way up and
                               > down, helping him out where he needed,
you know everything you need to
                               > know". Jack was stoked (he's 16) and I
was in awe of him being so
                               > appreciative of Dan who helped him get
the job. One day I'll stop being
                               > surprised but right now I still get
caught out with how there are others who
                               > are so appreciative of our kids. Just
wanted to share a warm and fuzzy -
                               > they help me keep going with the other
hard slog stuff we have to face -
                               > thank goodness for these little gems.
                               > 
                               > I have some education stuff happening
(negative) but don't want to go into
                               > it just now after my enjoyable weekend
so will ask for some comments at
                               > another time when I'm ready to tackle
it.......wish it could be never!
                               > Jo
                               > 
                               > 
                               > 
                               > -----Original Message-----
                               > From:
familyvoices-bounces at inpress.pledgonline.com
                               >
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
                               > Voices
                               > Sent: Sunday, 17 May 2009 2:39 PM
                               > To:
familyvoices at inpress.pledgonline.com
                               > Subject: Re: FV: What is inclusion?
                               > 
                               > HI Gina
                               > Just been skyping with Anita. Wow is
that scary I think the rule should be
                               > only head for camera.
                               > 
                               > I have also just gone to itunes and
downloaded away the podcasts?? What are
                               > they?
                               > 
                               > Is anyone interested in skypeing?
                               > Cheers Jane
                               > 
                               > 
                               > Jane Warner/Hudson
                               > 
                               > 07 46714737
                               > 
                               > 
                               > -----Original Message-----
                               > From:
familyvoices-bounces at inpress.pledgonline.com
                               >
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of
Family
                               > Voices
                               > Sent: Sunday, May 17, 2009 1:32 PM
                               > To:
familyvoices at inpress.pledgonline.com
                               > Subject: Re: FV: What is inclusion?
                              > 
                               > Hi Jane
                               > 
                               > Bearing in mind I haven't got P2Go at
this stage but this is only as I
                               > understand it...
                               > 
                               > Q/ With the prolquo when I go into
"about me" Can I put in stuff where
                               > it
                               > says "I go to the .....school?" ie
Goondiwindi. If it is yes I will
                               > then
                               > work out how, I just don't want to be
trying to work something out that
                               > I
                               > cant do.
                               > 
                               > I believe you can add in your own
words etc, you might have to fiddle
                               > with the spelling, punctuation etc of
Goondawindi to get the voice to
                               > say it well enough for you to be happy
with, ie it might need some
                               > phonetic spelling, hyphens etc to work
it out. In time you will work
                               > out how to spell things to have the
'real voice' pronounce it well
                               > enough.
                               > 
                               > Q/Which manual or directions do you
think are the simplest for
                               > programming?
                               > 
                               > Have you joined the P2Go group - there
are some great parents who have
                               > been beta testing it on that group and
they are very keen to help out.
                               > I posted the link a while back, but
can resend if you need it. These
                               > are people actually using it for their
kids now, so would be great to
                               > post your specific questions to them.
The developers are very hands on
                               > too.
                               > 
                               > 
                               > Q/ Do you think it would be worth my
while to get a Iphone for me? (I
                               > saw
                               > one on ebay that looked ok), Sarah
have the Ipod so that I can learn to
                               > use
                               > it while she is. At some stage I would
like her to use the phone just
                               > not
                               > sure if this is the right tool. Ie my
thought for her was maybe a phone
                               > with video connection to me so she can
learn mum rings, I see her face
                               > and
                               > from their we learn answering and talk
back.
                               > 
                               > We haven't got the iPhone yet, but
this was our plan... Shawn is off
                               > contract with his phone at the moment
having changed jobs and now for
                               > the first time in his working career
not provided a phone (shame about
                               > that). So he was going to lock into a
$49 or $59 capped plan to curb
                               > his costs each month. Optus are
currently offering iPhone plans with a
                               > 8gig phone at this price so we believe
we could sign up to one of those
                               > plans, bring his number across to that
plan, then move the sim card to
                               > his Samsung phone an then just use the
iPhone for Mac without a sim card
                               > (or buy a cheap prepaid plan if we
felt it was good as an emergency
                               > phone). At least that way I could
start developing options for its use,
                               > start storing things I would normally
store on a stepped switch
                               > communicator and so on.
                               > 
                               > I still need to find a way to switch
adapt it, no-one has worked that
                               > out yet - but I will keep trying. 
                               > 
                               > You would just have to check out the
costs/capabilities of video calls
                               > if that was a goal - I don't know much
about that. Maybe skype is
                               > available to use via the internet
connections rather than phone calls -
                               > not sure on that one.
                               > 
                               > 
                               > In saying all this she is very good
with the ipod I put hi five and
                               > wiggles
                               > on yesterday and it is a hit.
                               > 
                               > There are also some great free PIXAR
short films on iTunes you can
                               > download - Mac loves them. Also check
out the podcasts that are out
                               > there. We found heaps of stories for
Mac on podcasts (all free). Mac
                               > has a very eclectic selection on his
ipod. Jason Mraz is a big hit, he
                              > likes to sing along, but he also likes
some albums called 'Little
                               > Voices' which is kids singing more
contemporary and classic songs. He
                               > seems to have ended his Tom Jones
phase (now that the 'beer ad' is off
                               > tv), still partial to some Kiss from
time to time. He is a funny kid
                               > really - he would be happy to have
some big political speeches on there,
                               > loves a big political statement on the
news, he readily 'glaarrs' along
                               > with the speaker - we are not sure
whether he is 'for or agin' Mr Rudd
                               > yet, but he certainly pipes up
everytime Kevvy is banging on about stuff
                               > on tv or radio.
                               > 
                               > I am also going to see what I can
learn about the Database program Bento
                               > which can be used on the iPhone and
see if a PODD style system could be
                               > converted into that format. Just
trying to find some workshops on PODD
                               > systems somewhere in the country at
the moment so I can learn more.
                               > 
                               > Sorry more questions, where is the
best place to get easy step by step
                               > instructions to use ipod ie move
programs on front page.
                               > 
                               > Check out their website at
http://www.proloquo2go.com/
                               >  <http://www.proloquo2go.com/>
<http://www.proloquo2go.com/> 
                               > 
                               > 
                               > Can I download a dvd to ipod direct or
does everything have to go thru
                               > itunes?
                               > 
                               > I think you can just convert a DVD
into ipod formats - there would be
                               > software to do that depending on
whether you are on PC or Mac. Some
                               > might be freeware, some cheap, some
expensive. Again, since I haven't
                               > got the touch yet I can't be sure. 
                               > 
                               > Thanks Gina. You are such a
inspirtation, I would love to get you to do
                               > a
                               > workshop for want of a better word in
Goondiwindi. The young families I
                               > work with could learn so much from
you.
                               > Anytime :-)
                               > 
                               > Just a thought which I am sure you
have covered, when you talk with the
                               > school do you have someone beside you?
  
                               > I have my husband sitting beside me
for all these meetings. I would not
                               > go in there alone for love nor money.
We sometimes don't think it is
                               > fair on those we meet with. Shawn and
I have been together now for 21
                               > years and know exactly where one
another sits on issues so we can play
                               > the "good cop/bad cop" roles pretty
well, and where we know it is
                               > unfair, is that we switch mid meeting
if it is needed. Because Shawn
                               > has been doing so much study on
disability representation in the Media
                               > etc he is great because he can just
spout stuff, but also because he is
                               > a journalist he is trained to
question, so he turns their questions
                               > round back at them - so we know we
don't really play fair. We also don'
                               > t go in for all the 'guilt' stuff we
are meant to - guilt is soooo
                               > over-rated :-). For example there are
kids at the school who have been
                               > denied access to other schools because
they have 'behavioural and/or
                               > emotional type issues' (I know,
shouldn't happen, shouldn't be denied
                               > access anywhere, but it does) so our
school does take them with open
                               > arms, but these families are then
sooooo grateful their kid has been
                               > accepted they are not going to risk
making waves and subsequently they
                               > have been forced into this position of
having to feel grateful and/or
                               > disempowered by the system. So, when
you don't do the guilt thing, I
                               > guess it becomes a bit confronting for
'the system'.
                               > 
                               > Hope it helps
                               > 
                               > Feel free to contact me anytime if you
think I can be useful. Mac's
                               > birthday is in June - he might get his
iPhone then. So excessive
                               > providing such a thing to a 6yo but I
honestly think it has the
                               > potential to be such a fab tool for
him I will just have to cope with
                               > being an over indulgent parent (guilt
free of course).
                               > 
                               > Gina
                               > 
                               > 
                               > 
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From familyvoices at inpress.pledgonline.com  Mon Jun 22 00:45:56 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 22 Jun 2009 17:45:56 +1000
Subject: FV: Hi from Jo
In-Reply-To: <000601c9eee8$3d69d860$b83d8920$@net.au>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au><701423EF02784E27809819C914E46EE3@hp>
	<000601c9eee8$3d69d860$b83d8920$@net.au>
Message-ID: <999820F49AB245158B6CAC01BE1E197D@dell91>

HI Al

I have been away for a week so just catching up on the wonderful FV.  I know
of a family whose daughter went to boarding school in High school.  Maybe I
could link you to them?

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, June 17, 2009 11:09 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi There Al,

Wonderful to hear from you.  Wow, I am still absorbing the possibility of
Elliot going to boarding school, how amazing would that be.  I hope you get
some responses from people as it will be so interesting to learn how they
went about it.   I haven't heard of anyone doing it but being a city gal and
not having anything to do with boarding schools down here it doesn't put me
in that area.

 

I'll be thinking of you all next week talking about all this stuff and hope
you'll have the time to let us know how it goes.  I am so with you on the
scary bit, and  exciting at the same time wondering where all these
discussions and actions will take us and thrilled to be sharing with
likeminded people.  

 

I feel like I'm getting to know Sharon and Elliot through you so please say
hi to them for me.  Are they coming down in August too?

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Wednesday, 17 June 2009 5:26 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo 

It is great to read what you are up to. I know what you meant about the
library teacher it, and how much impact those few kind words have.

Sharon and myself are puting together a similar evening with friends next
week. Darrell will be joining us aswell for a few days to disscus the 

possibility of Elliot going to an Ag school next year. Scarry stuff as the
closest Ag school is 4000 km away. has anybody had any experience

with there kids in an Ag school boarding situation. would love to here
positive or negative. 

I still dont know what date  I will be in Perth but would love to catch up
.about mid August.

Cheers Al Mason----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 8:08 PM

Subject: Re: FV: Hi from Jo

 

Thats so awesome Jo! You made my night!!!

 

Jaquie xx

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 6:18 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Thanks Maureen, he had a great day today with everyone thrilled to see him
again.  Frank said it will be better next week in regard to him helping the
teacher now that they have a few ideas so here's hoping.  I walked Dan home
from the school and as we passed the teachers car park his old library
teacher stopped and yelled out "Dan came to my library to see me today", she
had genuine warmth and excitement in her voice - wonderful for me to hear.
Give me a few days to get over this hive of activity and I'll sit down doing
some reflections on how tomorrow night goes.  

 

It's so lovely to hear from you, hoping all is going well over your way,

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 1:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Look forward to hearing how it all goes Jo, both with Dan's work placement
and your circles meeting.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 11:14 AM

Subject: Re: FV: Hi from Jo

 

Thanks everyone, it was lovely to hear from you all.  

 

Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and
to share - who knows who'll be drifting into town for the odd catch up and
although this isn't quite the same still a great way to stay in touch.  I
can so understand your nervousness and I am in awe of people who can go onto
stage with all that confidence.  Please pass on my congratulations to Rachel
on all her hard work and wishing you both a fabulous trip.   When do you get
back?

 

Anita, your description of not holding on too tightly and knowing when to
let go is the one I struggle with constantly, if you have any tips to share
would love to hear them.  When did you start Warren's circle of support and
did you develop it yourself or use a model from somewhere,  have you been
challenged with any radical suggestions and if so, how did you manage it.
Hope you don't mind all these questions but another one is, do you think the
circle would be self sustaining if you were not involved - this is my aim
for Dan's support and would love to hear your thoughts.

 

I have just dropped Dan off to his Work Placement, everyone was very warm
and welcoming.  He so knew something was up this morning, wearing spiffy
clothes (not the usual school uniform) and I had been telling him he was
going to his old school to support the teacher, he was talking to me nonstop
and pulling everything off the table and bench tops (I wasn't enjoying that
bit) but think it was to do with some nervousness on his part.

 

One more sleep and we have our evening with friends, will give you some
feedback on how the night goes.

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo "All Good" and well done in the Nunn household you all deserve lots of
praise.
What a shame distances are so great and we are not in to flitting around the
country and visiting each other. Clearly we all have so much Knowledge and
warm feelings to share. In the High household we are getting ready for the
Ireland journey. We are so pleased how hard Rachel has worked on her
presentation and how confident she is feeling. I think it is mum who will be
sitting on the side lines who will be the most nervous .
My warmest wishes to you all Miriam


  _____  



To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo

Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay.  

Jo

 


  _____  


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From familyvoices at inpress.pledgonline.com  Mon Jun 22 00:46:52 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 22 Jun 2009 17:46:52 +1000
Subject: FV: Hi from Jo
In-Reply-To: <8AC72F6C-FFD5-4600-A191-2A7E4481A468@include.com.au>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au><701423EF02784E27809819C914E46EE3@hp><000601c9eee8$3d69d860$b83d8920$@net.au>
	<8AC72F6C-FFD5-4600-A191-2A7E4481A468@include.com.au>
Message-ID: <4FD8011CBA3449AE8770BE5BD30324B1@dell91>

HI Al

I think this is the same person.  Sure of it.  Can link you in if you like.

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: Thursday, June 18, 2009 12:59 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Al

There was an Australian Story video on 'Claire goes to College' that showed
a country girl going to boarding school.  I have a copy that I could send up
via Darrell if you like.  Need it back sometime as I use it for teaching.

 

Bob

----------------------------------------------------------

Bob Jackson PhD

Psychologist

Adjunct Associate Professor of Education

Edith Cowan University

 

Include Pty Ltd

21 Anembo road

Carmel  WA  6076

Phone:       61-8-92935302

Mobile:  0407667108

www.include.com.au

----------------------------------------------

 

 

 

On 17/06/2009, at 9:09 AM, Family Voices wrote:





Hi There Al,

Wonderful to hear from you.  Wow, I am still absorbing the possibility of
Elliot going to boarding school, how amazing would that be.  I hope you get
some responses from people as it will be so interesting to learn how they
went about it.   I haven't heard of anyone doing it but being a city gal and
not having anything to do with boarding schools down here it doesn't put me
in that area.

 

I'll be thinking of you all next week talking about all this stuff and hope
you'll have the time to let us know how it goes.  I am so with you on the
scary bit, and  exciting at the same time wondering where all these
discussions and actions will take us and thrilled to be sharing with
likeminded people. 

 

I feel like I'm getting to know Sharon and Elliot through you so please say
hi to them for me.  Are they coming down in August too?

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Wednesday, 17 June 2009 5:26 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo

It is great to read what you are up to. I know what you meant about the
library teacher it, and how much impact those few kind words have.

Sharon and myself are puting together a similar evening with friends next
week. Darrell will be joining us aswell for a few days to disscus the

possibility of Elliot going to an Ag school next year. Scarry stuff as the
closest Ag school is 4000 km away. has anybody had any experience

with there kids in an Ag school boarding situation. would love to here
positive or negative.

I still dont know what date  I will be in Perth but would love to catch up
.about mid August.

Cheers Al Mason----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Tuesday, June 16, 2009 8:08 PM

Subject: Re: FV: Hi from Jo

 

Thats so awesome Jo! You made my night!!!

 

Jaquie xx

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 6:18 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Thanks Maureen, he had a great day today with everyone thrilled to see him
again.  Frank said it will be better next week in regard to him helping the
teacher now that they have a few ideas so here's hoping.  I walked Dan home
from the school and as we passed the teachers car park his old library
teacher stopped and yelled out "Dan came to my library to see me today", she
had genuine warmth and excitement in her voice - wonderful for me to hear.
Give me a few days to get over this hive of activity and I'll sit down doing
some reflections on how tomorrow night goes. 

 

It's so lovely to hear from you, hoping all is going well over your way,

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 1:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Look forward to hearing how it all goes Jo, both with Dan's work placement
and your circles meeting.

Maureen

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Tuesday, June 16, 2009 11:14 AM

Subject: Re: FV: Hi from Jo

 

Thanks everyone, it was lovely to hear from you all. 

 

Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and
to share - who knows who'll be drifting into town for the odd catch up and
although this isn't quite the same still a great way to stay in touch.  I
can so understand your nervousness and I am in awe of people who can go onto
stage with all that confidence.  Please pass on my congratulations to Rachel
on all her hard work and wishing you both a fabulous trip.   When do you get
back?

 

Anita, your description of not holding on too tightly and knowing when to
let go is the one I struggle with constantly, if you have any tips to share
would love to hear them.  When did you start Warren's circle of support and
did you develop it yourself or use a model from somewhere,  have you been
challenged with any radical suggestions and if so, how did you manage it.
Hope you don't mind all these questions but another one is, do you think the
circle would be self sustaining if you were not involved - this is my aim
for Dan's support and would love to hear your thoughts.

 

I have just dropped Dan off to his Work Placement, everyone was very warm
and welcoming.  He so knew something was up this morning, wearing spiffy
clothes (not the usual school uniform) and I had been telling him he was
going to his old school to support the teacher, he was talking to me nonstop
and pulling everything off the table and bench tops (I wasn't enjoying that
bit) but think it was to do with some nervousness on his part.

 

One more sleep and we have our evening with friends, will give you some
feedback on how the night goes.

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo "All Good" and well done in the Nunn household you all deserve lots of
praise.
What a shame distances are so great and we are not in to flitting around the
country and visiting each other. Clearly we all have so much Knowledge and
warm feelings to share. In the High household we are getting ready for the
Ireland journey. We are so pleased how hard Rachel has worked on her
presentation and how confident she is feeling. I think it is mum who will be
sitting on the side lines who will be the most nervous .
My warmest wishes to you all Miriam


  _____  



To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo

Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay. 

Jo

 


  _____  


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=18&uage=55&cl=14&sl=0&dist=50&po=1&do=2&trackingid=1046138&r2s=1&_t=7731660
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From familyvoices at inpress.pledgonline.com  Mon Jun 22 03:42:47 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 22 Jun 2009 20:12:47 +0930
Subject: FV: To Miriam from Maureen
In-Reply-To: <3655BC565726446B940D3EBBBA08DDFC@D8XYGK1S>
References: <7tpfp5$b9je2a@ipmail01.adl6.internode.on.net><D1E8C19EB7744AE8BBAF93392ACD33C6@D8XYGK1S>
	<COL117-W16134D6F515C2D3CC1FDC4D23B0@phx.gbl> 
	<3655BC565726446B940D3EBBBA08DDFC@D8XYGK1S> 
Message-ID: <COL117-W41A0B6E4FC2881F4868FAD2390@phx.gbl>


I think it really good to share it around, In Adelaide many older parents are being introduced to it and finding it helpful.

Thanks for thoughts for Ireland it seems to be rushing upon us. Take care  cheers miriam   







To: familyvoices at inpress.pledgonline.com
Date: Sat, 20 Jun 2009 18:40:33 +1000
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: To Miriam from Maureen





I am most grateful Miriam.
I will acknowledge all contributors as I would like to pass it on to my friend Cheryl Simpson, who is going through the same process as we are.
So, many thanks and best wishes for your trip with Rachel to Ireland. 
Cheers
Maureen

----- Original Message ----- 
From: Family Voices 
To: familyvoices at inpress.pledgonline.com 
Sent: Saturday, June 20, 2009 6:22 PM
Subject: Re: FV: To Miriam from Maureen

Hello Maureen this is the email I originally sent to Jane. Is this what you were thinking about ? I must repeat how useful we have found it to be It made us sit still for a while and think things through. The future is all a bit scary and I have to admit we do seem to live in a never never land thinking things will always be the same as they are today. This brought a bit of reality to us and that was good. Take care, I enjoy keep hearing everyones news. and send my warmest wishes Miriam



To: familyvoices at inpress.pledgonline.com
Date: Fri, 1 May 2009 18:22:56 +0930
From: familyvoices at inpress.pledgonline.com
Subject: FV: Jane 48 hour plan






  


To the 48 Hour plan. Firstly I must tell you it was the brain child of a lady named Fiona Munro and I would be grateful if you could acknowledge her if you pass it on to others. It was devised for older parents who for obvious reasons were well aware of the need to pass on vital information about their dependant son or daughter to others if the need should suddenly arise.
 
There are three parts to this plan  
 The first is a picture book made up of Photos of Rachel doing things she enjoys , her family her work her daily activates and her animals, Some places she like to go and Holidays she has been on.
We collected these together and in conversation about them she wrote a few words about each one.
The purpose of part one is so that a stranger who may need to take over in an emergency might be introduced to Rachel and so discover things in her life she could relate to and share with them
 
Part two is the 48 hour plan, as you will see this gathers together much of the vital information which is essential for the immediate and ongoing support of Rachel?s daily program. The questions I think are self explanatory, but most of which Rachel might not be able to remember or know where to find.
 
Part Three (not Attached) is a summary of what is mostly in my brain alone, all the background of her general health needs , the names of Doctors the times seen and current progress.
We were so aware that much of this information is passed from doctors to parents, which is then not really shared. Also we are aware that much information is still kept in the filing cabinets of the various medicos?. We have made it a practice of requesting all reports of assessments and examinations. This document will tell where these are kept and which specialists are currently involved 
 
 
 


To: familyvoices at inpress.pledgonline.com
Date: Sat, 20 Jun 2009 10:13:48 +1000
From: familyvoices at inpress.pledgonline.com
Subject: FV: To Miriam from Maureen




Hi Miriam
When we first started Family Voices, you kindly sent your spread sheet for your daughters support and routine. I was most impressed with this and thought I saved it and now can't locate it. I am wondering if you would re send it to me? I would be most grateful. I am working on Lauren's on going support as we as a family, think through how we will support her in the future. I would be most grateful Miriam.
With thanks
Maureen
 


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From familyvoices at inpress.pledgonline.com  Mon Jun 22 13:22:53 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 23 Jun 2009 04:22:53 +0800
Subject: FV: Hi from Jo
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au><701423EF02784E27809819C914E46EE3@hp><000601c9eee8$3d69d860$b83d8920$@net.au>
	<999820F49AB245158B6CAC01BE1E197D@dell91>
Message-ID: <20C0206E33B74F6FA9E42B0F2E50F9E3@hp>

Hi Jane
thanks for that offer, we would love to comunicate with somebody that had already crossed that bridge.
Cheers Al.
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Monday, June 22, 2009 3:45 PM
  Subject: Re: FV: Hi from Jo


  HI Al

  I have been away for a week so just catching up on the wonderful FV.  I know of a family whose daughter went to boarding school in High school.  Maybe I could link you to them?

  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, June 17, 2009 11:09 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi from Jo

   

  Hi There Al,

  Wonderful to hear from you.  Wow, I am still absorbing the possibility of Elliot going to boarding school, how amazing would that be.  I hope you get some responses from people as it will be so interesting to learn how they went about it.   I haven't heard of anyone doing it but being a city gal and not having anything to do with boarding schools down here it doesn't put me in that area.

   

  I'll be thinking of you all next week talking about all this stuff and hope you'll have the time to let us know how it goes.  I am so with you on the scary bit, and  exciting at the same time wondering where all these discussions and actions will take us and thrilled to be sharing with likeminded people.  

   

  I feel like I'm getting to know Sharon and Elliot through you so please say hi to them for me.  Are they coming down in August too?

  Jo

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Wednesday, 17 June 2009 5:26 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi from Jo

   

  Hi Jo 

  It is great to read what you are up to. I know what you meant about the library teacher it, and how much impact those few kind words have.

  Sharon and myself are puting together a similar evening with friends next week. Darrell will be joining us aswell for a few days to disscus the 

  possibility of Elliot going to an Ag school next year. Scarry stuff as the closest Ag school is 4000 km away. has anybody had any experience

  with there kids in an Ag school boarding situation. would love to here positive or negative. 

  I still dont know what date  I will be in Perth but would love to catch up .about mid August.

  Cheers Al Mason----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Tuesday, June 16, 2009 8:08 PM

    Subject: Re: FV: Hi from Jo

     

    Thats so awesome Jo! You made my night!!!

     

    Jaquie xx

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Tuesday, 16 June 2009 6:18 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi from Jo

     

    Thanks Maureen, he had a great day today with everyone thrilled to see him again.  Frank said it will be better next week in regard to him helping the teacher now that they have a few ideas so here's hoping.  I walked Dan home from the school and as we passed the teachers car park his old library teacher stopped and yelled out "Dan came to my library to see me today", she had genuine warmth and excitement in her voice - wonderful for me to hear.  Give me a few days to get over this hive of activity and I'll sit down doing some reflections on how tomorrow night goes.  

     

    It's so lovely to hear from you, hoping all is going well over your way,

    Jo

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Tuesday, 16 June 2009 1:51 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi from Jo

     

    Look forward to hearing how it all goes Jo, both with Dan's work placement and your circles meeting.

    Maureen

      ----- Original Message ----- 

      From: Family Voices 

      To: familyvoices at inpress.pledgonline.com 

      Sent: Tuesday, June 16, 2009 11:14 AM

      Subject: Re: FV: Hi from Jo

       

      Thanks everyone, it was lovely to hear from you all.  

       

      Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and to share - who knows who'll be drifting into town for the odd catch up and although this isn't quite the same still a great way to stay in touch.  I can so understand your nervousness and I am in awe of people who can go onto stage with all that confidence.  Please pass on my congratulations to Rachel on all her hard work and wishing you both a fabulous trip.   When do you get back?

       

      Anita, your description of not holding on too tightly and knowing when to let go is the one I struggle with constantly, if you have any tips to share would love to hear them.  When did you start Warren's circle of support and did you develop it yourself or use a model from somewhere,  have you been challenged with any radical suggestions and if so, how did you manage it.  Hope you don't mind all these questions but another one is, do you think the circle would be self sustaining if you were not involved - this is my aim for Dan's support and would love to hear your thoughts.

       

      I have just dropped Dan off to his Work Placement, everyone was very warm and welcoming.  He so knew something was up this morning, wearing spiffy clothes (not the usual school uniform) and I had been telling him he was going to his old school to support the teacher, he was talking to me nonstop and pulling everything off the table and bench tops (I wasn't enjoying that bit) but think it was to do with some nervousness on his part.

       

      One more sleep and we have our evening with friends, will give you some feedback on how the night goes.

      Jo

       

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Sunday, 14 June 2009 10:31 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi from Jo

       

      Hi Jo "All Good" and well done in the Nunn household you all deserve lots of praise.
      What a shame distances are so great and we are not in to flitting around the country and visiting each other. Clearly we all have so much Knowledge and warm feelings to share. In the High household we are getting ready for the Ireland journey. We are so pleased how hard Rachel has worked on her presentation and how confident she is feeling. I think it is mum who will be sitting on the side lines who will be the most nervous .
      My warmest wishes to you all Miriam


--------------------------------------------------------------------------


      To: familyvoices at inpress.pledgonline.com
      Date: Sun, 14 Jun 2009 09:10:46 +0800
      From: familyvoices at inpress.pledgonline.com
      Subject: FV: Hi from Jo

      Hi There Everyone,

       

      Just an update from the Nunn household and keeping in touch.

       

      You may remember me hinting at some Education stuff I wasn't looking forward to tackling - well last week was the week that we had the meeting.  In WA we are allowed to apply for a 13th year for our children to attend school, we had decided we wanted Daniel to attend an additional year if possible.  Problem was our principal we had a good relationship with and who I know would have supported us moved on in 3rd term 2008.  The acting principal was the deputy who immediately set about trying to get Daniel out of the school at the end of last year - we won that one and he returned to the school this year.  Anyhow, anyhow, anyhow, the new principal came on board this term and I was convinced that the deputy (who was the acting principal) would have had a major influence in whether or not Dan could do a 13th year and I was feeling that we wouldn't get a hearing as to why we felt the need for Dan to continue on for the additional year.  However, off we trot, put our case forward - he says "do you want the short answer or the long answer", I sometimes just don't know when to keep my mouth shut so add a few more points - really just repeating what I'd already said, when I finally stop he says "yes", well, I'm gobsmacked and say in the most intelligent way "what", he then say's "there is a condition" ( so, I am thinking this was just too easy) when he adds "his behaviour will have to improve, I agree and say "place him on a Management Behaviour Program" (laughing) and he says " it's not good when Frank (Dan's Aide) is asking him to go into class and Daniel is bolting out of the school gates and that has to change".  I swear if you weren't listening carefully you would have thought he was serious.  He then tells me he's put all the paper work through and it's been approved by the education department.  We are still feeling a bit shocked and stunned but absolutely thrilled with the outcome.

       

      Another nice story, we have been trying to get Daniel into a Work Placement with no luck to date.  One of the things we have been thinking about is him supporting a teacher in a school and thought his old school would be the place to start as we still know quite a few people working there.  The Coordinator phoned me last week to let me know he's been given a position with his old year 7 teacher to work as an aide beginning next week.  If will be for 5 weeks with a possibility of it continuing.  This type of job fits so well with Daniel and his personality so am very much hoping it will be successful.

       

      On Wednesday night we will be having Dan's first Microboard Meeting so feeling a tad nervous, there's something about inviting people into our lives that leaves us feeling a bit vulnerable - will they come, if they do will they want to be a part of supporting Dan to continue being included in our community, will they walk the talk!!  I want to change the pinwheel model in that it's me at the centre organising everything to something that looks much messier with lots of people organising stuff around Dan - does that make sense?  I will soon find out if it's realistic to achieve and if so will be so much better for Dan and me.

       

      I hope everyone is well and keeping the flu's at bay.  

      Jo

       


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From familyvoices at inpress.pledgonline.com  Mon Jun 22 13:36:53 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 23 Jun 2009 04:36:53 +0800
Subject: FV: Hi from Jo
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au><701423EF02784E27809819C914E46EE3@hp><000601c9eee8$3d69d860$b83d8920$@net.au><8AC72F6C-FFD5-4600-A191-2A7E4481A468@include.com.au>
	<4FD8011CBA3449AE8770BE5BD30324B1@dell91>
Message-ID: <EFCCACD06CA94679843A3FE73F1A9CAF@hp>

Hi Bob,
I have been in Darwin for the weekend only just got back today.I would love that vidieo to come up with Darrell,but he is on his way today.
He departs Perth at 10 30am if it is at all possible to get it to him, I will put you on my "buy him a beer when im in Perth" list.
Cheers Al.
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Monday, June 22, 2009 3:46 PM
  Subject: Re: FV: Hi from Jo


  HI Al

  I think this is the same person.  Sure of it.  Can link you in if you like.

  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: Thursday, June 18, 2009 12:59 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi from Jo

   

  Hi Al

  There was an Australian Story video on 'Claire goes to College' that showed a country girl going to boarding school.  I have a copy that I could send up via Darrell if you like.  Need it back sometime as I use it for teaching.

   

  Bob

  ----------------------------------------------------------

  Bob Jackson PhD

  Psychologist

  Adjunct Associate Professor of Education

  Edith Cowan University

   

  Include Pty Ltd

  21 Anembo road

  Carmel  WA  6076

  Phone:       61-8-92935302

  Mobile:  0407667108

  www.include.com.au

  ----------------------------------------------

   

   

   

  On 17/06/2009, at 9:09 AM, Family Voices wrote:





  Hi There Al,

  Wonderful to hear from you.  Wow, I am still absorbing the possibility of Elliot going to boarding school, how amazing would that be.  I hope you get some responses from people as it will be so interesting to learn how they went about it.   I haven't heard of anyone doing it but being a city gal and not having anything to do with boarding schools down here it doesn't put me in that area.

   

  I'll be thinking of you all next week talking about all this stuff and hope you'll have the time to let us know how it goes.  I am so with you on the scary bit, and  exciting at the same time wondering where all these discussions and actions will take us and thrilled to be sharing with likeminded people. 

   

  I feel like I'm getting to know Sharon and Elliot through you so please say hi to them for me.  Are they coming down in August too?

  Jo

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Wednesday, 17 June 2009 5:26 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi from Jo

   

  Hi Jo

  It is great to read what you are up to. I know what you meant about the library teacher it, and how much impact those few kind words have.

  Sharon and myself are puting together a similar evening with friends next week. Darrell will be joining us aswell for a few days to disscus the

  possibility of Elliot going to an Ag school next year. Scarry stuff as the closest Ag school is 4000 km away. has anybody had any experience

  with there kids in an Ag school boarding situation. would love to here positive or negative.

  I still dont know what date  I will be in Perth but would love to catch up .about mid August.

  Cheers Al Mason----- Original Message -----

    From: Family Voices

    To: familyvoices at inpress.pledgonline.com

    Sent: Tuesday, June 16, 2009 8:08 PM

    Subject: Re: FV: Hi from Jo

     

    Thats so awesome Jo! You made my night!!!

     

    Jaquie xx

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Tuesday, 16 June 2009 6:18 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi from Jo

     

    Thanks Maureen, he had a great day today with everyone thrilled to see him again.  Frank said it will be better next week in regard to him helping the teacher now that they have a few ideas so here's hoping.  I walked Dan home from the school and as we passed the teachers car park his old library teacher stopped and yelled out "Dan came to my library to see me today", she had genuine warmth and excitement in her voice - wonderful for me to hear.  Give me a few days to get over this hive of activity and I'll sit down doing some reflections on how tomorrow night goes. 

     

    It's so lovely to hear from you, hoping all is going well over your way,

    Jo

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Tuesday, 16 June 2009 1:51 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi from Jo

     

    Look forward to hearing how it all goes Jo, both with Dan's work placement and your circles meeting.

    Maureen

      ----- Original Message -----

      From: Family Voices

      To: familyvoices at inpress.pledgonline.com

      Sent: Tuesday, June 16, 2009 11:14 AM

      Subject: Re: FV: Hi from Jo

       

      Thanks everyone, it was lovely to hear from you all. 

       

      Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and to share - who knows who'll be drifting into town for the odd catch up and although this isn't quite the same still a great way to stay in touch.  I can so understand your nervousness and I am in awe of people who can go onto stage with all that confidence.  Please pass on my congratulations to Rachel on all her hard work and wishing you both a fabulous trip.   When do you get back?

       

      Anita, your description of not holding on too tightly and knowing when to let go is the one I struggle with constantly, if you have any tips to share would love to hear them.  When did you start Warren's circle of support and did you develop it yourself or use a model from somewhere,  have you been challenged with any radical suggestions and if so, how did you manage it.  Hope you don't mind all these questions but another one is, do you think the circle would be self sustaining if you were not involved - this is my aim for Dan's support and would love to hear your thoughts.

       

      I have just dropped Dan off to his Work Placement, everyone was very warm and welcoming.  He so knew something was up this morning, wearing spiffy clothes (not the usual school uniform) and I had been telling him he was going to his old school to support the teacher, he was talking to me nonstop and pulling everything off the table and bench tops (I wasn't enjoying that bit) but think it was to do with some nervousness on his part.

       

      One more sleep and we have our evening with friends, will give you some feedback on how the night goes.

      Jo

       

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Sunday, 14 June 2009 10:31 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi from Jo

       

      Hi Jo "All Good" and well done in the Nunn household you all deserve lots of praise.
      What a shame distances are so great and we are not in to flitting around the country and visiting each other. Clearly we all have so much Knowledge and warm feelings to share. In the High household we are getting ready for the Ireland journey. We are so pleased how hard Rachel has worked on her presentation and how confident she is feeling. I think it is mum who will be sitting on the side lines who will be the most nervous .
      My warmest wishes to you all Miriam


--------------------------------------------------------------------------


      To: familyvoices at inpress.pledgonline.com
      Date: Sun, 14 Jun 2009 09:10:46 +0800
      From: familyvoices at inpress.pledgonline.com
      Subject: FV: Hi from Jo

      Hi There Everyone,

       

      Just an update from the Nunn household and keeping in touch.

       

      You may remember me hinting at some Education stuff I wasn't looking forward to tackling - well last week was the week that we had the meeting.  In WA we are allowed to apply for a 13th year for our children to attend school, we had decided we wanted Daniel to attend an additional year if possible.  Problem was our principal we had a good relationship with and who I know would have supported us moved on in 3rd term 2008.  The acting principal was the deputy who immediately set about trying to get Daniel out of the school at the end of last year - we won that one and he returned to the school this year.  Anyhow, anyhow, anyhow, the new principal came on board this term and I was convinced that the deputy (who was the acting principal) would have had a major influence in whether or not Dan could do a 13th year and I was feeling that we wouldn't get a hearing as to why we felt the need for Dan to continue on for the additional year.  However, off we trot, put our case forward - he says "do you want the short answer or the long answer", I sometimes just don't know when to keep my mouth shut so add a few more points - really just repeating what I'd already said, when I finally stop he says "yes", well, I'm gobsmacked and say in the most intelligent way "what", he then say's "there is a condition" ( so, I am thinking this was just too easy) when he adds "his behaviour will have to improve, I agree and say "place him on a Management Behaviour Program" (laughing) and he says " it's not good when Frank (Dan's Aide) is asking him to go into class and Daniel is bolting out of the school gates and that has to change".  I swear if you weren't listening carefully you would have thought he was serious.  He then tells me he's put all the paper work through and it's been approved by the education department.  We are still feeling a bit shocked and stunned but absolutely thrilled with the outcome.

       

      Another nice story, we have been trying to get Daniel into a Work Placement with no luck to date.  One of the things we have been thinking about is him supporting a teacher in a school and thought his old school would be the place to start as we still know quite a few people working there.  The Coordinator phoned me last week to let me know he's been given a position with his old year 7 teacher to work as an aide beginning next week.  If will be for 5 weeks with a possibility of it continuing.  This type of job fits so well with Daniel and his personality so am very much hoping it will be successful.

       

      On Wednesday night we will be having Dan's first Microboard Meeting so feeling a tad nervous, there's something about inviting people into our lives that leaves us feeling a bit vulnerable - will they come, if they do will they want to be a part of supporting Dan to continue being included in our community, will they walk the talk!!  I want to change the pinwheel model in that it's me at the centre organising everything to something that looks much messier with lots of people organising stuff around Dan - does that make sense?  I will soon find out if it's realistic to achieve and if so will be so much better for Dan and me.

       

      I hope everyone is well and keeping the flu's at bay. 

      Jo

       


--------------------------------------------------------------------------

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From familyvoices at inpress.pledgonline.com  Wed Jun 24 01:55:16 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Wed, 24 Jun 2009 18:55:16 +1000
Subject: FV: Hi from Jo
In-Reply-To: <20C0206E33B74F6FA9E42B0F2E50F9E3@hp>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au><701423EF02784E27809819C914E46EE3@hp><000601c9eee8$3d69d860$b83d8920$@net.au><999820F49AB245158B6CAC01BE1E197D@dell91>
	<20C0206E33B74F6FA9E42B0F2E50F9E3@hp>
Message-ID: <A7E2159D926E418F85A8809B991556E9@dell91>

Hi Al

 

I am sure that will not be hard to link you in with Sally and Claire.  How
would you like to do this?  Can I pass on your email; phone or I could ask
them if I can give you a contact number and maybe good time to call??

 

What do you think?

Regards Jane

 

Jane Warner/Hudson

gerlindejane1 at bigpond.com

6 Koina Street,

Goondiwindi Qld 4390

 

07 46714737 home

Work 07 46714809 - - 0407748839

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, June 23, 2009 6:23 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jane

thanks for that offer, we would love to comunicate with somebody that had
already crossed that bridge.

Cheers Al.

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Monday, June 22, 2009 3:45 PM

Subject: Re: FV: Hi from Jo

 

HI Al

I have been away for a week so just catching up on the wonderful FV.  I know
of a family whose daughter went to boarding school in High school.  Maybe I
could link you to them?

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, June 17, 2009 11:09 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi There Al,

Wonderful to hear from you.  Wow, I am still absorbing the possibility of
Elliot going to boarding school, how amazing would that be.  I hope you get
some responses from people as it will be so interesting to learn how they
went about it.   I haven't heard of anyone doing it but being a city gal and
not having anything to do with boarding schools down here it doesn't put me
in that area.

 

I'll be thinking of you all next week talking about all this stuff and hope
you'll have the time to let us know how it goes.  I am so with you on the
scary bit, and  exciting at the same time wondering where all these
discussions and actions will take us and thrilled to be sharing with
likeminded people.  

 

I feel like I'm getting to know Sharon and Elliot through you so please say
hi to them for me.  Are they coming down in August too?

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Wednesday, 17 June 2009 5:26 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo 

It is great to read what you are up to. I know what you meant about the
library teacher it, and how much impact those few kind words have.

Sharon and myself are puting together a similar evening with friends next
week. Darrell will be joining us aswell for a few days to disscus the 

possibility of Elliot going to an Ag school next year. Scarry stuff as the
closest Ag school is 4000 km away. has anybody had any experience

with there kids in an Ag school boarding situation. would love to here
positive or negative. 

I still dont know what date  I will be in Perth but would love to catch up
.about mid August.

Cheers Al Mason----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 8:08 PM

Subject: Re: FV: Hi from Jo

 

Thats so awesome Jo! You made my night!!!

 

Jaquie xx

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 6:18 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Thanks Maureen, he had a great day today with everyone thrilled to see him
again.  Frank said it will be better next week in regard to him helping the
teacher now that they have a few ideas so here's hoping.  I walked Dan home
from the school and as we passed the teachers car park his old library
teacher stopped and yelled out "Dan came to my library to see me today", she
had genuine warmth and excitement in her voice - wonderful for me to hear.
Give me a few days to get over this hive of activity and I'll sit down doing
some reflections on how tomorrow night goes.  

 

It's so lovely to hear from you, hoping all is going well over your way,

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 1:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Look forward to hearing how it all goes Jo, both with Dan's work placement
and your circles meeting.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 11:14 AM

Subject: Re: FV: Hi from Jo

 

Thanks everyone, it was lovely to hear from you all.  

 

Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and
to share - who knows who'll be drifting into town for the odd catch up and
although this isn't quite the same still a great way to stay in touch.  I
can so understand your nervousness and I am in awe of people who can go onto
stage with all that confidence.  Please pass on my congratulations to Rachel
on all her hard work and wishing you both a fabulous trip.   When do you get
back?

 

Anita, your description of not holding on too tightly and knowing when to
let go is the one I struggle with constantly, if you have any tips to share
would love to hear them.  When did you start Warren's circle of support and
did you develop it yourself or use a model from somewhere,  have you been
challenged with any radical suggestions and if so, how did you manage it.
Hope you don't mind all these questions but another one is, do you think the
circle would be self sustaining if you were not involved - this is my aim
for Dan's support and would love to hear your thoughts.

 

I have just dropped Dan off to his Work Placement, everyone was very warm
and welcoming.  He so knew something was up this morning, wearing spiffy
clothes (not the usual school uniform) and I had been telling him he was
going to his old school to support the teacher, he was talking to me nonstop
and pulling everything off the table and bench tops (I wasn't enjoying that
bit) but think it was to do with some nervousness on his part.

 

One more sleep and we have our evening with friends, will give you some
feedback on how the night goes.

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo "All Good" and well done in the Nunn household you all deserve lots of
praise.
What a shame distances are so great and we are not in to flitting around the
country and visiting each other. Clearly we all have so much Knowledge and
warm feelings to share. In the High household we are getting ready for the
Ireland journey. We are so pleased how hard Rachel has worked on her
presentation and how confident she is feeling. I think it is mum who will be
sitting on the side lines who will be the most nervous .
My warmest wishes to you all Miriam


  _____  



To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo

Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay.  

Jo

 


  _____  


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From familyvoices at inpress.pledgonline.com  Wed Jun 24 23:58:52 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Thu, 25 Jun 2009 16:58:52 +1000
Subject: FV: Fw: Family Retreat Sept 2009
Message-ID: <694CD15415E34F358615050302C752E8@D8XYGK1S>



Hi everyone
Please pass this on to your contacts
Maureen
: Family Retreat Sept 2009


Dear Friends and Colleagues,

 

Personalised Lifestyle Assistance (PLA) together with Family Leadership and You (FLY) are hosting an exciting retreat for families who wish to think about and create lifestyles with their sons and daughters that are unique, empowering and community inclusive.  

 

Please see attached for further information. As there are limited places, priority will be given to families from Victoria and the ACT.

 

Please feel free to pass this brochure through your networks - especially to families. 

 

Kind regards, Deb

 

NB All registrations will be taken by Laura Sykes from PLA (see brochure for details)

 

 

Deb Rouget

Facilitator

Personalised Lifestyle Assistance

Monday - Thursday

Address: Suite 2/18 Floriston Rd Boronia, VIC, AUS, 3155

Email: debrouget at netspace.net.au

Phone: 03 9739 8333

Mobile: 0412 001388

 
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From familyvoices at inpress.pledgonline.com  Thu Jun 25 04:42:11 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Thu, 25 Jun 2009 21:12:11 +0930
Subject: FV: Fw: Family Retreat Sept 2009
In-Reply-To: <694CD15415E34F358615050302C752E8@D8XYGK1S>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
Message-ID: <548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>

Thanks for the info Maureen -- looks like a great retreat.  Ben and I  
have booked our trip for Costa Rica and leaving on 28th August for two  
weeks.  Ben requested we go to France afterwards so we are staying in  
Paris for 10 days.  Asked him why France and he wants to see where  
French films are made and what French cranes( lifting type) look  
like!?!   Will be interesting!
Regards
Jill
On 25/06/2009, at 4:28 PM, Family Voices wrote:

>
>
> Hi everyone
> Please pass this on to your contacts
> Maureen
> : Family Retreat Sept 2009
>
> Dear Friends and Colleagues,
>
> Personalised Lifestyle Assistance (PLA) together with Family  
> Leadership and You (FLY) are hosting an exciting retreat for  
> families who wish to think about and create lifestyles with their  
> sons and daughters that are unique, empowering and community  
> inclusive.
>
> Please see attached for further information. As there are limited  
> places, priority will be given to families from Victoria and the ACT.
>
> Please feel free to pass this brochure through your networks ?  
> especially to families.
>
> Kind regards, Deb
>
> NB All registrations will be taken by Laura Sykes from PLA (see  
> brochure for details)
>
>
> Deb Rouget
> Facilitator
> Personalised Lifestyle Assistance
> Monday - Thursday
> Address: Suite 2/18 Floriston Rd Boronia, VIC, AUS, 3155
> Email: debrouget at netspace.net.au
> Phone: 03 9739 8333
> Mobile: 0412 001388
>
> <Family Retreat 2009 Final.pdf>

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 14:14:42 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 07:14:42 +1000
Subject: FV: Fw: Family Retreat Sept 2009
In-Reply-To: <548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>
Message-ID: <25026B7C579E4248B5C077470B651C3A@dell91>

HI Jill

 

Hope you have a great time.  How exciting going the Paris.

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: Thursday, June 25, 2009 9:42 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Fw: Family Retreat Sept 2009

 

Thanks for the info Maureen -- looks like a great retreat.  Ben and I have
booked our trip for Costa Rica and leaving on 28th August for two weeks.
Ben requested we go to France afterwards so we are staying in Paris for 10
days.  Asked him why France and he wants to see where French films are made
and what French cranes( lifting type) look like!?!   Will be interesting!

Regards

Jill

On 25/06/2009, at 4:28 PM, Family Voices wrote:





 

 

Hi everyone

Please pass this on to your contacts

Maureen

: Family Retreat Sept 2009

 

Dear Friends and Colleagues,

 

Personalised Lifestyle Assistance (PLA) together with Family Leadership and
You (FLY) are hosting an exciting retreat for families who wish to think
about and create lifestyles with their sons and daughters that are unique,
empowering and community inclusive.  

 

Please see attached for further information. As there are limited places,
priority will be given to families from Victoria and the ACT.

 

Please feel free to pass this brochure through your networks - especially to
families.

 

Kind regards, Deb

 

NB All registrations will be taken by Laura Sykes from PLA (see brochure for
details)

 

 

Deb Rouget

Facilitator

Personalised Lifestyle Assistance

Monday - Thursday

Address: Suite 2/18 Floriston Rd Boronia, VIC, AUS, 3155

Email: debrouget at netspace.net.au

Phone: 03 9739 8333

Mobile: 0412 001388

 

<Family Retreat 2009 Final.pdf>

 

Checked by AVG - www.avg.com
Version: 8.5.374 / Virus Database: 270.12.91/2201 - Release Date: 06/25/09
06:22:00


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From familyvoices at inpress.pledgonline.com  Thu Jun 25 15:09:22 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 06:09:22 +0800
Subject: FV: Jo seeking help
In-Reply-To: <694CD15415E34F358615050302C752E8@D8XYGK1S>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
Message-ID: <006b01c9f5e1$9928e290$cb7aa7b0$@com>

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work.  

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 15:36:57 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 08:36:57 +1000
Subject: FV: Fw: Family Retreat Sept 2009
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>
Message-ID: <BD9A39CA7FF740AD94966134106D53E0@D8XYGK1S>

Hi Jill,
Costa Rica is exotic enough and then Paris!! I am envious. I took Lauren to Paris 9 years ago. She wanted to go to Euro Disney, and apart from that I wanted to show her a sophisticated city. What she did love was a boat trip on the Seine and it went under the bridges and gave a commentary on the bridge as we went under it. The boat went around the back of Notre Dame and she absolutely loved it.
(So did I)
No use taking on the museums and art galleries, but the bus trip to Monet's garden was a treat for both of us - the hint being, go on the morning one.
Wish I was coming.
Enjoy
 Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Thursday, June 25, 2009 9:42 PM
  Subject: Re: FV: Fw: Family Retreat Sept 2009


  Thanks for the info Maureen -- looks like a great retreat.  Ben and I have booked our trip for Costa Rica and leaving on 28th August for two weeks.  Ben requested we go to France afterwards so we are staying in Paris for 10 days.  Asked him why France and he wants to see where French films are made and what French cranes( lifting type) look like!?!   Will be interesting!
  Regards
  Jill

  On 25/06/2009, at 4:28 PM, Family Voices wrote:




    Hi everyone
    Please pass this on to your contacts
    Maureen
    : Family Retreat Sept 2009


    Dear Friends and Colleagues,

    Personalised Lifestyle Assistance (PLA) together with Family Leadership and You (FLY) are hosting an exciting retreat for families who wish to think about and create lifestyles with their sons and daughters that are unique, empowering and community inclusive.  

    Please see attached for further information. As there are limited places, priority will be given to families from Victoria and the ACT.

    Please feel free to pass this brochure through your networks ? especially to families.

    Kind regards, Deb

    NB All registrations will be taken by Laura Sykes from PLA (see brochure for details)


    Deb Rouget
    Facilitator
    Personalised Lifestyle Assistance
    Monday - Thursday
    Address: Suite 2/18 Floriston Rd Boronia, VIC, AUS, 3155
    Email: debrouget at netspace.net.au
    Phone: 03 9739 8333
    Mobile: 0412 001388

    <Family Retreat 2009 Final.pdf>

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 17:25:08 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 09:55:08 +0930
Subject: FV: Jo seeking help
In-Reply-To: <006b01c9f5e1$9928e290$cb7aa7b0$@com>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<006b01c9f5e1$9928e290$cb7aa7b0$@com>
Message-ID: <890E3EA6-BD1D-47C8-925A-D91CFF602AE7@aapt.net.au>

Hi Jo
What a great start - photo resume and people listening and  
supportive.  With the language stuff, i try not to deviate from using  
anything which is not 'typical language'.  I do not use the word  
disability or anything which is negative or labelling.   I focus on  
Ben's interests, abilities and then discuss any additional assistance  
he may need. At first, people seem a bit confused as they are  
expecting to hear Down syndrome, disability and a list of what he  
can't do and how much extra work will be involved.   Not too far in  
the discussions though, folk start to catch on and start to ask  
positive questions.   e.g.  "how can we help Ben learn to  
do ............"  instead of adding to the list of what he won't be  
able to do............ " Focus on what Dan can do, what and how much  
he enjoys doing particular activities and how his work experience will  
help him decide what he wants to do in the future.  In mentioning  
Dan's future, it will take people a step further in thinking that Dan  
does have a future too that needs planning and are less likely to see  
him as a 'charitable object'.  Most people start to enjoy being part  
of that process.  So much depends on how he is introduced initially.    
Dan's Aide demonstrating his respect and confidence in Dan's abilities  
will go a long way to setting the right scene.  A ' please do Dan a  
favour' or an apologetic attitude about what Dan can't do or how much  
work is involved is the one which will get the charity attitude.  The  
resume should be one that Dan has helped compile so that he has  
ownership of it and can be excited and enthusiastic  when showing it.   
Congratulations Jo - another exciting step forward
Jill
On 26/06/2009, at 7:39 AM, Family Voices wrote:
> Hi There Everyone,
>
> I had a meeting with the school today about Daniels Work Placement  
> (used to be called Work Experience when I was at school).  Anyhow  
> they want to do up a Resume with Daniel in IT ? lots of photos of  
> Dan doing things that could potentially fit in with a work  
> situation.   When the Resume is complete Daniel and his Aide will  
> take it around to businesses we have identified as being suitable  
> places for him to work.
>
> During the meeting I said that I felt it?s important we use the  
> right language and that we don?t set Daniel up to be a charitable  
> project.  I said that some people may initially have Daniel work for  
> them for charitable reasons but if we use positive language along  
> with them getting to know Dan this attitude has potential to shift  
> as I have seen occur in other areas of his life.  The people I met  
> with today were really keen to understand the correct language to  
> use when introducing Dan to potential employers and asked me to  
> provide them with information.  I am still struggling with the  
> correct language myself and would love it if you could suggest ways  
> of how we first introduce Dan and so on.  If anyone has done a  
> Resume and wouldn?t mind sharing we would find it very useful.  And  
> anything else you can think of to help Dan expand his work experience.
>
> Looking forward to hearing from you.
> Jo
>
>
>
> __________ Information from ESET NOD32 Antivirus, version of virus  
> signature database 4188 (20090625) __________
>
> The message was checked by ESET NOD32 Antivirus.
>
> http://www.eset.com

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 17:35:31 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 10:05:31 +0930
Subject: FV: Fw: Family Retreat Sept 2009
In-Reply-To: <25026B7C579E4248B5C077470B651C3A@dell91>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>
	<25026B7C579E4248B5C077470B651C3A@dell91>
Message-ID: <B0CEDCA3-417E-4EED-82F2-BDAA0C0E4134@aapt.net.au>

Thankyou Jane.........

Jill

> HI Jill
>
> Hope you have a great time.  How exciting going the Paris.
> 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: Thursday, June 25, 2009 9:42 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Fw: Family Retreat Sept 2009
>
> Thanks for the info Maureen -- looks like a great retreat.  Ben and  
> I have booked our trip for Costa Rica and leaving on 28th August for  
> two weeks.  Ben requested we go to France afterwards so we are  
> staying in Paris for 10 days.  Asked him why France and he wants to  
> see where French films are made and what French cranes( lifting  
> type) look like!?!   Will be interesting!
> Regards
> Jill
> On 25/06/2009, at 4:28 PM, Family Voices wrote:
>
>
>
>
> Hi everyone
> Please pass this on to your contacts
> Maureen
> : Family Retreat Sept 2009
>
> Dear Friends and Colleagues,
>
> Personalised Lifestyle Assistance (PLA) together with Family  
> Leadership and You (FLY) are hosting an exciting retreat for  
> families who wish to think about and create lifestyles with their  
> sons and daughters that are unique, empowering and community  
> inclusive.
>
> Please see attached for further information. As there are limited  
> places, priority will be given to families from Victoria and the ACT.
>
> Please feel free to pass this brochure through your networks ?  
> especially to families.
>
> Kind regards, Deb
>
> NB All registrations will be taken by Laura Sykes from PLA (see  
> brochure for details)
>
>
> Deb Rouget
> Facilitator
> Personalised Lifestyle Assistance
> Monday - Thursday
> Address: Suite 2/18 Floriston Rd Boronia, VIC, AUS, 3155
> Email: debrouget at netspace.net.au
> Phone: 03 9739 8333
> Mobile: 0412 001388
>
> <Family Retreat 2009 Final.pdf>
>
> Checked by AVG - www.avg.com
> Version: 8.5.374 / Virus Database: 270.12.91/2201 - Release Date:  
> 06/25/09 06:22:00
>

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 17:35:57 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 10:35:57 +1000
Subject: FV: Jo seeking help
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<006b01c9f5e1$9928e290$cb7aa7b0$@com>
Message-ID: <CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S>

Hi Jo
We have had a fair bit of experience with what you are going through.
The CV is a great start,
Lauren's interest is film, theatre and TV and celebrities.
So we started trying to find a position where she could be involved in something like that.
We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.
There are plenty of learning's here.
One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.

Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 

This position was paid a normal wage. 
However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension. 
I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.
The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.

I could go on and on and on Jo.
We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.

She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.
I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.
After the chainsaw incident, we took Lauren away from the organization and went it alone completely.

It was allot of hard work for me. 

Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.

I drove some video organizations mad with "Please let her work here!"requests.
Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!

I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!


She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.
She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.

I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.

Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.

No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.

So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.

Good luck Jo.
It's a long and interesting road.
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Friday, June 26, 2009 8:09 AM
  Subject: FV: Jo seeking help


  Hi There Everyone,

   

  I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT - lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work.  

   

  During the meeting I said that I felt it's important we use the right language and that we don't set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn't mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.

   

  Looking forward to hearing from you.

  Jo

   



  __________ Information from ESET NOD32 Antivirus, version of virus signature database 4188 (20090625) __________

  The message was checked by ESET NOD32 Antivirus.

  http://www.eset.com
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From familyvoices at inpress.pledgonline.com  Thu Jun 25 17:52:21 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 10:22:21 +0930
Subject: FV: Fw: Family Retreat Sept 2009
In-Reply-To: <BD9A39CA7FF740AD94966134106D53E0@D8XYGK1S>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>
	<BD9A39CA7FF740AD94966134106D53E0@D8XYGK1S>
Message-ID: <F4914B5F-822B-4B1B-9A9C-143039358E78@aapt.net.au>

Thanks for the tips Maureen......Ben has already decided that a boat  
cruise is on the itinerary.  He also loves bridges,  particularly the  
underside (he has photos of all the bridges on the Yarra).  Hoping to  
get an apartment on Ile St Louis, an island in the middle of the  
Seine, not far from Notre Dame, so we will be surrounded by the river  
and walking across bridges all the time.  Ben will celebrate his 40th  
birthday with his brother (Lachlan) in Costa and with his aunt and  
uncle from US who we haven't seen for 14 years so will be a great time!
Jill
On 26/06/2009, at 8:06 AM, Family Voices wrote:

> Hi Jill,
> Costa Rica is exotic enough and then Paris!! I am envious. I took  
> Lauren to Paris 9 years ago. She wanted to go to Euro Disney, and  
> apart from that I wanted to show her a sophisticated city. What she  
> did love was a boat trip on the Seine and it went under the bridges  
> and gave a commentary on the bridge as we went under it. The boat  
> went around the back of Notre Dame and she absolutely loved it.
> (So did I)
> No use taking on the museums and art galleries, but the bus trip to  
> Monet's garden was a treat for both of us - the hint being, go on  
> the morning one.
> Wish I was coming.
> Enjoy
>  Maureen
> ----- Original Message -----
> From: Family Voices
> To: familyvoices at inpress.pledgonline.com
> Sent: Thursday, June 25, 2009 9:42 PM
> Subject: Re: FV: Fw: Family Retreat Sept 2009
>
> Thanks for the info Maureen -- looks like a great retreat.  Ben and  
> I have booked our trip for Costa Rica and leaving on 28th August for  
> two weeks.  Ben requested we go to France afterwards so we are  
> staying in Paris for 10 days.  Asked him why France and he wants to  
> see where French films are made and what French cranes( lifting  
> type) look like!?!   Will be interesting!
> Regards
> Jill
> On 25/06/2009, at 4:28 PM, Family Voices wrote:
>
>>
>>
>> Hi everyone
>> Please pass this on to your contacts
>> Maureen
>> : Family Retreat Sept 2009
>>
>> Dear Friends and Colleagues,
>> Personalised Lifestyle Assistance (PLA) together with Family  
>> Leadership and You (FLY) are hosting an exciting retreat for  
>> families who wish to think about and create lifestyles with their  
>> sons and daughters that are unique, empowering and community  
>> inclusive.
>> Please see attached for further information. As there are limited  
>> places, priority will be given to families from Victoria and the ACT.
>> Please feel free to pass this brochure through your networks ?  
>> especially to families.
>> Kind regards, Deb
>> NB All registrations will be taken by Laura Sykes from PLA (see  
>> brochure for details)
>> Deb Rouget
>> Facilitator
>> Personalised Lifestyle Assistance
>> Monday - Thursday
>> Address: Suite 2/18 Floriston Rd Boronia, VIC, AUS, 3155
>> Email: debrouget at netspace.net.au
>> Phone: 03 9739 8333
>> Mobile: 0412 001388
>> <Family Retreat 2009 Final.pdf>
>
>

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 18:07:58 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 09:07:58 +0800
Subject: FV: Jo seeking help
In-Reply-To: <CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>	<006b01c9f5e1$9928e290$cb7aa7b0$@com>
	<CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S>
Message-ID: <000601c9f5fa$8b7883d0$a2698b70$@net.au>

Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   

 

They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own.  

 

I would like to print off your emails to share with school if you are ok
with that.

 

Thanks again

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in
something like that.

We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage. 

However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension. 

I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.

 

It was allot of hard work for me. 

 

Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.

 

I drove some video organizations mad with "Please let her work
here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work.  

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



__________ Information from ESET NOD32 Antivirus, version of virus signature
database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 18:25:50 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 10:55:50 +0930
Subject: FV: Fw: Family Retreat Sept 2009
In-Reply-To: <548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>
Message-ID: <COL117-W682D3BB5DD0F3D1A674D0D2350@phx.gbl>


Hi Jill You must not miss Moulin Rouge and dinner in Montmartre street restaurant , Break the Bank, but Ben will not forget the experience Rachel loved it Have Fun  Miriam


To: familyvoices at inpress.pledgonline.com
Date: Thu, 25 Jun 2009 21:12:11 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Fw: Family Retreat Sept 2009

Thanks for the info Maureen -- looks like a great retreat.  Ben and I have booked our trip for Costa Rica and leaving on 28th August for two weeks.  Ben requested we go to France afterwards so we are staying in Paris for 10 days.  Asked him why France and he wants to see where French films are made and what French cranes( lifting type) look like!?!   Will be interesting!
Regards
Jill


On 25/06/2009, at 4:28 PM, Family Voices wrote:


 
 
Hi everyone
Please pass this on to your contacts
Maureen

: Family Retreat Sept 2009



Dear Friends and Colleagues,
 
Personalised Lifestyle Assistance (PLA) together with Family Leadership and You (FLY) are hosting an exciting retreat for families who wish to think about and create lifestyles with their sons and daughters that are unique, empowering and community inclusive.  
 
Please see attached for further information. As there are limited places, priority will be given to families from Victoria and the ACT.
 
Please feel free to pass this brochure through your networks ? especially to families.
 
Kind regards, Deb
 
NB All registrations will be taken by Laura Sykes from PLA (see brochure for details)
 
 
Deb Rouget
Facilitator
Personalised Lifestyle Assistance
Monday - Thursday
Address: Suite 2/18 Floriston Rd Boronia, VIC, AUS, 3155
Email: debrouget at netspace.net.au
Phone: 03 9739 8333
Mobile: 0412 001388
 <Family Retreat 2009 Final.pdf>

_________________________________________________________________
View photos of singles in your area Click Here
http://dating.ninemsn.com.au/search/search.aspx?exec=go&tp=q&gc=2&tr=1&lage=18&uage=55&cl=14&sl=0&dist=50&po=1&do=2&trackingid=1046138&r2s=1&_t=773166090&_r=WLM_EndText
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From familyvoices at inpress.pledgonline.com  Thu Jun 25 19:02:51 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 10:02:51 +0800
Subject: FV: Jo seeking help
In-Reply-To: <006b01c9f5e1$9928e290$cb7aa7b0$@com>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<006b01c9f5e1$9928e290$cb7aa7b0$@com>
Message-ID: <002401c9f602$364ca550$a2e5eff0$@net.au>

This is a great question Jo and I'm not sure how to answer it, but it
inspired some thoughts in me so here goes.

 

I think for our kids...Dan and Eli are on the more extreme end as far as
perceived disability goes and finding employment will take some out of the
box salesmanship. If you think of a resume as an advertisement for a person,
and remember the power of advertising to position people to focus on certain
things, then I think you are halfway there. Also remember what advertisers
know. Trying to reason with people doesn't work...if you want to enrol
people then you need to connect with them on an emotional level. Photos,
music, film and video testimonials are powerful ways to do that. I'd be
doing Dan's resume as a media text on a cd rom, not as a written document.

 

You can tell folks Daniel has gifts and abilities, but you'll be pushing
sh@# uphill in a wheelbarrow if you try to do that with words on a page.
Think about those promotion dvds from AACL.....thats effective advertising.

 

The other thing is I think all of us over focus on practical skills and
underfocus on the other things a person brings to a position. My masters was
on emotional intelligence and the growing trend for employers to look at eq
over iq or anything else. You can be the most brilliant person in the world
at your job but if you are toxic or cant collaborate then you can be very
counterproductive. Many employers are being smart enough to focus on team
building and a healthy work culture over other things now.

 

So, with our kids the trend in micro enterprise or work is to focus on
pretty 'low level' work (not that there is anything wrong with that...pizza
delivery was hands down my most fave job ever)....filling vending machines,
putting stuff in envelopes etc. If we start looking at the strengths of our
kids in higher level terms...and seriously, if you have a severe disability
given the challenges our kids have by the time our kids reach teenagerhood
they have experienced and survived a LOT of stuff and carry within them the
wisdom of several lifetimes...I see eli's choice to be happy as an
incredible example of his deep inner strength, given the sheer quantity of
physical pain he has endured...there are some really valuable things our
kids bring to a team just by being themselves.

 

Eli's business coach did this incredible session with him and the (growing)
team this week on roles in the business and doing an organisational chart.
Talking about eli's role as business owner and leader at the top, Tim said
that a leader has two roles: to enrol, and to inspire, and to determine the
culture of a business. If they do that, then they've done their work.  The
crew looked at each other...they all have powerful stories about how eli has
influenced their lives...and said well, he sure as hell does that!

 

An artist from one of the groups eli has joined who has become friends with
him has observed that he personally gets so much benefit from entering eli's
non-verbal world and feels deeper connection without words...he's open the
door for some corporate work for eli teaching high level business execs
about non-verbal communication and relationship...thats pretty cool!

 

I guess I'm suggesting that you could look at the effect Daniel has on
people and on groups...maybe some video testimonials from people who know
Daniel talking about what he brings to a workplace and how he has impacted
them....

 

Another thing you want to do is to be positioning businesses to be seeing it
as a privilege to have some body like Dan on board...you aren't looking for
any chance he can get...for example, you might start with this as an opener:

 

Are you a business who is open to innovation and cutting edge in your
practice?

Do you have a strong commitment to having a healthy business culture?

Are you up for the challenge of paving the way of the future?

 

....if not, then don't read any further. You aren't the business we're
looking for.

 

If you are  a business who is committed to innovation and brilliance, then
read on (or keep watching) for a unique opportunity to take some steps into
the future....

 

 

Then ...have some testimonials talking about how fabbo dan is (but don't
show them dan)

 

Than show them dan.

 

OK, that might be crap but you get the idea. We have enormous power in terms
of how we support others to view our kid and be receptive to them.

 

You might be able to do a deal with eli's business coach where he gives a
business free coaching for the initial period where they employ dan to help
them adjust their culture etc to be more fabulous and to enjoy all the
benefits of dan. he'd probably be up for this cos we are paying him right
now.

 

Just some thoughts.

 

Eli's coach might be up for a session on this if you want me to ask him...

 

Jaquie J

 

 

 

 

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 6:09 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work.  

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



__________ Information from ESET NOD32 Antivirus, version of virus signature
database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 20:01:18 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 12:31:18 +0930
Subject: FV: Jo seeking help
In-Reply-To: <000601c9f5fa$8b7883d0$a2698b70$@net.au>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>	<006b01c9f5e1$9928e290$cb7aa7b0$@com>
	<CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S>
	<000601c9f5fa$8b7883d0$a2698b70$@net.au>
Message-ID: <F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>

OK about the forwarding my email Jo.  You are already doing the  
positive stuff  as the meeting wouldn't have gone the way it did!   
Maureen's tales reminded me of a situation we had with Ben. He was  
doing some work experience with a house cleaning team.  House cleaning  
is the least thing he would be interested in doing so it was doomed  
from the beginning!  (another thing to keep in mind......not to set up  
for failure by doing things that Dan has no interest in).  Well, the  
person in charge rang me to tell me that Ben was not doing at all well  
and that 'people like him' do best collecting trolleys at  
supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the  
conversation ended very quickly.  That person actually apologised  
about five years later after he heard how well Ben was doing in his  
job as an admin assistant.   When suggestions like this are put  
forward, I now realise that there is no point into putting effort and  
time into these people....they are wasting Ben's time.   Surround  
yourself and Dan with people who believe in what you want to achieve  
and do not have their own agendas.  Ben has had his job for 19 years  
and is taking his second lot of long service leave in August.  It  
hasn't been without its worrying times, but what I now realise is that  
most of the problems were caused by other people and not by Ben.  It  
is so easy to fall into "it must be the person who has the disability"  
as the problem and then as the parent, try to fix the problem  by  
trying to 'fix' our son or daughter.  It is also good cop out stuff  
for some people so that they don't have to put in more effort.   
Hopefully I have learned to be a bit more circumspect.  These issues  
are similar to school issues when inclusion is not the real agenda.   
It has all been worth every bit of worry, effort etc as Ben's life is  
so rich with all the contact he has in community and the knowledge  
that 'ordinary' people have learned from his community presence.
Best Wishes
Jill
On 26/06/2009, at 10:37 AM, Family Voices wrote:

> Thanks so much Jill and Maureen for your support, I appreciated the  
> stories Maureen of the difficulties and am taking note for future  
> reference, I had to laugh at the possible ?Logging in the Otways?  
> job and can see how ridiculous it can get and how important it is to  
> keep a sense of humour.  The agencies here will not support Dan  
> because of his disabilities ? they have all this criteria that he  
> has to fit in to for him to be helped, so have known for many years  
> that we will have to find him jobs ourselves ? I so understand the  
> comment about ?it being too difficult for them?, it?s an internal  
> battle I?ve had for many years, even about the schooling.  Am going  
> to make a big effort to take on your advice Jill, to be positive and  
> raise my expectations.
>
> They are going to make up Dan?s resume in his IT class, he will be  
> doing it ? they came up with this idea themselves.  I think I may  
> have finally gotten the knack of planting seeds in a certain way  
> where they are coming up with the ideas.  It?s only taken me 12  
> years!!  I couldn?t believe how the meeting went with the enthusiasm  
> and ideas flowing ? more than I could come up with on my own.
>
> I would like to print off your emails to share with school if you  
> are ok with that.
>
> Thanks again
> Jo
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Friday, 26 June 2009 8:36 AM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Jo seeking help
>
> Hi Jo
> We have had a fair bit of experience with what you are going through.
> The CV is a great start,
> Lauren's interest is film, theatre and TV and celebrities.
> So we started trying to find a position where she could be involved  
> in something like that.
> We went totally mainstream, and the only thing that was different  
> from any other young person going for a position is that she had a  
> support worker with her.
> There are plenty of learning's here.
> One theatre that she went to took all her information and she filled  
> out "The form"and they said the next step would be a phone  
> interview! Well, that did happen when I wasn't home and, quiet  
> honestly, Lauren sounds more like a 10 year old than an (at the  
> time) 18 year old when she is on the phone. After that they wrote to  
> her and said don't bother EVER applying to our theatre again! She  
> was devastated and so was I. We took a big step back. I have since  
> heard that allot of places do a first interview on the phone and  
> once you get past that you get to the next round.
>
> Next theatre Lauren got the position fair and square and the  
> management were most acceptable and actually surprised me at how  
> accepting they were. However, under the manager came the regular  
> staff, who had no idea how to work with someone with a disability.  
> The support worker went with her and she was selling programs at the  
> theatre entrance. The podium she was to stand on was dangerous for  
> her and she had to balance her books! The support worker was on the  
> ball and Lauren was working very hard. However 4 hours on her feet  
> standing on a small platform is physically too much for her and they  
> offered her a job ion the cloakroom. That was fine,only when I went  
> to pick her up she was sitting in what looked like a cupboard! She  
> was so miserable as she had been there for 4 hours and spoken to no  
> one and was terribly concerned she had got things (Peoples  
> belongings) mixed up!I couldn't get her to go back she was so  
> stressed! The support worker couldn't fit in the cupboard so  
> wandered around the theatre.
>
> This position was paid a normal wage.
> However, even though meagre, I had to report it to Centrelink every  
> fortnight, even if she didn't get a shift and it never incringed on  
> her pension.
> I was so worried about phoning them on the right day at the right  
> time, it became a big bug bare! I did it and hated it. Lauren  
> couldn't possibly manage that part of it so it all became my  
> responsibility and I am trying to step back out of her life not take  
> on more responsibility. So just be aware of the Centrelink  
> responsibility.
> The learning's in this experience is, that we should have supported  
> the organization better and perhaps they could have supported Lauren  
> better. I always felt the management wanted to but didn't know how,  
> and I wasn't confident enough to approach them - I kept thinking  
> that Lauren would be too difficult for them so they wouldn't take  
> her on. I think I was wrong.
>
> I could go on and on and on Jo.
> We have had 7 years of interviews and let downs and it has been  
> terribly difficult to keep Lauren's morale high.
>
> She was offered a traineeship through a government job seeking  
> organization. The young woman who was assisting Lauren to find a job  
> would get Lauren all excited every Monday when the jobs were given  
> to the organization. Lauren would always phone me from the place  
> with much excitement about working at McDonalds clearing tables or  
> Hungry Jacks serving customers (All things she couldn't physically  
> do) and then one day in much excitement she was told she was  
> eligible for a traineeship and it was for "Logging in the  
> Otways"...I very calmly spoke to the young woman who was helping  
> Lauren and explained Lauren can't use a chainsaw. The young lady had  
> no idea what "Logging in the Otways"meant. - in case you don't know  
> what the Otways is, it is a mountain range near the great ocean road  
> in Victoria.
> I am only telling you this Jo, because if we didn't keep a sense of  
> humour we would have gone in sane during our efforts to assist Lauren.
> After the chainsaw incident, we took Lauren away from the  
> organization and went it alone completely.
>
> It was allot of hard work for me.
>
> Lauren had work experience at a video store when she was at school.  
> Infact she had three lots of work experience at three different  
> stores and she was very good at re winding videos and selecting the  
> movies for in house and dusting shelves.
>
> I drove some video organizations mad with "Please let her work  
> here!"requests.
> Video Easy put an interesting flyer in our letterbox that looked  
> like a wanted poster. At the time they were looking for customers.  
> We have a printing business, so I took it to work and made it look  
> like a wanted poster for Lauren looking for a job at Video Easy and  
> I sent it back to their head office and every video easy store near  
> our home. I thought it was very clever, but no one from Video Easy  
> answered the request!
>
> I spoke for hours to the HR people at Blockbuster. I got them all  
> sorts of information about employing people with a disability.  
> Lauren would be very happy working one shift a week. That's probably  
> all she could have done. I was told they don't promise any of their  
> staff a shift so it would be discrimination against all the other  
> employees!!
>
>
> She now has a voluntary position as an usher in a cinema. She loves  
> it. She is very valued by the organization she works for and she has  
> flexibility around her health and her ability.
> She also has a paid job at a farmers market where she works in the  
> citrus stall handing out samples of fruit and making orange juice.  
> She is learning to serve customers. That is only once a month.
>
> I could go on and on....some good people, some terrible, some really  
> "get it"others haven't got a clue.
>
> Now Lauren is 8 years out of school, what I notice around the group  
> of friends who left school at the same time is..The ones who's  
> parents have really assisted with job hunting, have got somewhere,  
> and those who's parents can't find the time to assist them and go to  
> interviews with them, well, those young ones are still on the "job  
> training wheel" or work in disability training programs or the  
> workshops type places.
>
> No one comes knocking at your door saying "I have a job for Dan" you  
> have to be out there and searching for it.
>
> So my suggestion is..........Be creative, make sure he has good  
> support, make sure the organization he works with are well supported  
> too, and that their staff are patient and caring. Try not to let all  
> the knockbacks get you down and I hope you don't have too many of  
> them.
>
> Good luck Jo.
> It's a long and interesting road.
> Maureen
> ----- Original Message -----
> From: Family Voices
> To: familyvoices at inpress.pledgonline.com
> Sent: Friday, June 26, 2009 8:09 AM
> Subject: FV: Jo seeking help
>
> Hi There Everyone,
>
> I had a meeting with the school today about Daniels Work Placement  
> (used to be called Work Experience when I was at school).  Anyhow  
> they want to do up a Resume with Daniel in IT ? lots of photos of  
> Dan doing things that could potentially fit in with a work  
> situation.   When the Resume is complete Daniel and his Aide will  
> take it around to businesses we have identified as being suitable  
> places for him to work.
>
> During the meeting I said that I felt it?s important we use the  
> right language and that we don?t set Daniel up to be a charitable  
> project.  I said that some people may initially have Daniel work for  
> them for charitable reasons but if we use positive language along  
> with them getting to know Dan this attitude has potential to shift  
> as I have seen occur in other areas of his life.  The people I met  
> with today were really keen to understand the correct language to  
> use when introducing Dan to potential employers and asked me to  
> provide them with information.  I am still struggling with the  
> correct language myself and would love it if you could suggest ways  
> of how we first introduce Dan and so on.  If anyone has done a  
> Resume and wouldn?t mind sharing we would find it very useful.  And  
> anything else you can think of to help Dan expand his work experience.
>
> Looking forward to hearing from you.
> Jo
>
>
>
> __________ Information from ESET NOD32 Antivirus, version of virus  
> signature database 4188 (20090625) __________
>
> The message was checked by ESET NOD32 Antivirus.
>
> http://www.eset.com

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 20:02:09 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 12:32:09 +0930
Subject: FV: Fw: Family Retreat Sept 2009
In-Reply-To: <COL117-W682D3BB5DD0F3D1A674D0D2350@phx.gbl>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>
	<COL117-W682D3BB5DD0F3D1A674D0D2350@phx.gbl>
Message-ID: <C3966145-D8F1-4039-A0CC-21617FC23573@aapt.net.au>

Thanks Miriam........Ben saw a photo of Moulin Rouge in one of the  
catalogues and said we will be going there!  He also saw a night time  
cruise on the Seine with dinner in the Eiffel tower afterwards and  
wants to do that too.  Sure sounds like we will be breaking the bank!   
Thinking about taking your advice about taking the back two seats in  
the plane as I like an aisle seat and Ben likes the window so that  
will meet both our needs.  Do you hear the toilet flushing all night  
though as those seats  usually back on to the toilet?   What date are  
you and Rachel leaving in August?
Regards
Jill
On 26/06/2009, at 10:55 AM, Family Voices wrote:

> Hi Jill You must not miss Moulin Rouge and dinner in Montmartre  
> street restaurant , Break the Bank, but Ben will not forget the  
> experience Rachel loved it Have Fun  Miriam
> To: familyvoices at inpress.pledgonline.com
> Date: Thu, 25 Jun 2009 21:12:11 +0930
> From: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Fw: Family Retreat Sept 2009
>
> Thanks for the info Maureen -- looks like a great retreat.  Ben and  
> I have booked our trip for Costa Rica and leaving on 28th August for  
> two weeks.  Ben requested we go to France afterwards so we are  
> staying in Paris for 10 days.  Asked him why France and he wants to  
> see where French films are made and what French cranes( lifting  
> type) look like!?!   Will be interesting!
> Regards
> Jill
> On 25/06/2009, at 4:28 PM, Family Voices wrote:
>
>
>
> Hi everyone
> Please pass this on to your contacts
> Maureen
> : Family Retreat Sept 2009
>
> Dear Friends and Colleagues,
>
> Personalised Lifestyle Assistance (PLA) together with Family  
> Leadership and You (FLY) are hosting an exciting retreat for  
> families who wish to think about and create lifestyles with their  
> sons and daughters that are unique, empowering and community  
> inclusive.
>
> Please see attached for further information. As there are limited  
> places, priority will be given to families from Victoria and the ACT.
>
> Please feel free to pass this brochure through your networks ?  
> especially to families.
>
> Kind regards, Deb
>
> NB All registrations will be taken by Laura Sykes from PLA (see  
> brochure for details)
>
>
> Deb Rouget
> Facilitator
> Personalised Lifestyle Assistance
> Monday - Thursday
> Address: Suite 2/18 Floriston Rd Boronia, VIC, AUS, 3155
> Email: debrouget at netspace.net.au
> Phone: 03 9739 8333
> Mobile: 0412 001388
>
> <Family Retreat 2009 Final.pdf>
>
>
> Click Here View photos of singles in your area

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From familyvoices at inpress.pledgonline.com  Thu Jun 25 20:50:10 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 13:20:10 +0930
Subject: FV: Fw: Family Retreat Sept 2009
In-Reply-To: <C3966145-D8F1-4039-A0CC-21617FC23573@aapt.net.au>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<548090D4-D461-4A4D-85B3-7BB7229EEF63@aapt.net.au>
	<COL117-W682D3BB5DD0F3D1A674D0D2350@phx.gbl> 
	<C3966145-D8F1-4039-A0CC-21617FC23573@aapt.net.au>
Message-ID: <COL117-W75E7705507C3830CAD90AD2350@phx.gbl>


Jill We leave  16th August for Dublin and will be in England/London about the time you are swanning down the Seine, Just a little too far for a coffee I fear. Don't worry about the toilets, The seats are well worth it if you can get them. Lots of people around it is a busy area but in a strange way very private.Miriam


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:32:09 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Fw: Family Retreat Sept 2009

Thanks Miriam........Ben saw a photo of Moulin Rouge in one of the catalogues and said we will be going there!  He also saw a night time cruise on the Seine with dinner in the Eiffel tower afterwards and wants to do that too.  Sure sounds like we will be breaking the bank!  Thinking about taking your advice about taking the back two seats in the plane as I like an aisle seat and Ben likes the window so that will meet both our needs.  Do you hear the toilet flushing all night though as those seats  usually back on to the toilet?   What date are you and Rachel leaving in August?
Regards
Jill



On 26/06/2009, at 10:55 AM, Family Voices wrote:

Hi Jill You must not miss Moulin Rouge and dinner in Montmartre street restaurant , Break the Bank, but Ben will not forget the experience Rachel loved it Have Fun  Miriam


To: familyvoices at inpress.pledgonline.com
Date: Thu, 25 Jun 2009 21:12:11 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Fw: Family Retreat Sept 2009

Thanks for the info Maureen -- looks like a great retreat.  Ben and I have booked our trip for Costa Rica and leaving on 28th August for two weeks.  Ben requested we go to France afterwards so we are staying in Paris for 10 days.  Asked him why France and he wants to see where French films are made and what French cranes( lifting type) look like!?!   Will be interesting!
Regards
Jill


On 25/06/2009, at 4:28 PM, Family Voices wrote:


 
 
Hi everyone
Please pass this on to your contacts
Maureen

: Family Retreat Sept 2009



Dear Friends and Colleagues,
 
Personalised Lifestyle Assistance (PLA) together with Family Leadership and You (FLY) are hosting an exciting retreat for families who wish to think about and create lifestyles with their sons and daughters that are unique, empowering and community inclusive.  
 
Please see attached for further information. As there are limited places, priority will be given to families from Victoria and the ACT.
 
Please feel free to pass this brochure through your networks ? especially to families.
 
Kind regards, Deb
 
NB All registrations will be taken by Laura Sykes from PLA (see brochure for details)
 
 
Deb Rouget
Facilitator
Personalised Lifestyle Assistance
Monday - Thursday
Address: Suite 2/18 Floriston Rd Boronia, VIC, AUS, 3155
Email: debrouget at netspace.net.au
Phone: 03 9739 8333
Mobile: 0412 001388
 <Family Retreat 2009 Final.pdf>



Click Here View photos of singles in your area

_________________________________________________________________
Looking for a place to rent, share or buy this winter? Find your next place with Ninemsn?property
http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fninemsn%2Edomain%2Ecom%2Eau%2F%3Fs%5Fcid%3DFDMedia%3ANineMSN%5FHotmail%5FTagline&_t=774152450&_r=Domain_tagline&_m=EXT
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From familyvoices at inpress.pledgonline.com  Thu Jun 25 21:28:16 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 13:58:16 +0930
Subject: FV: Jo seeking help
In-Reply-To: <F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S>
	<006b01c9f5e1$9928e290$cb7aa7b0$@com>
	<CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S>
	<000601c9f5fa$8b7883d0$a2698b70$@net.au> 
	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>
Message-ID: <COL117-W305B50733734D2DEBD34FAD2350@phx.gbl>


Jo all these messages to you make me feel really guilty about getting work for Rachel . We did start to go down that journey when she first left school and like many found it all so depressing. The jobs  we managed to get her into were tokenism and did not last or were simply things she did not enjoy doing."I am not cleaning out bird cages" and it was all greatly upseting for her.

So we took another path. We first of all helped Rachel to understand that she did get a pension each week and therefore was assured of an income. However this was like being paid and she was expected(by us) to be willing to put something back into the community.

We did not care what it was but she needed to go out of the house several days a week to do something, This could be a Gym session ,typing and helping with the children at the day care centre, typing for the Salvation army, offering to set up and clear up for a sporting or social club. dance lesson , walking a friends dogs. a TAFE course. It did not matter what it was. Some of these things she needed someone with her and some she did not

What was important for us was that she gained a good feeling about giving back and not just taking her pension for granted and doing nothing.

The activities she took on were ones which followed her interest and so she was fully committed to them . This enabled  her to be welcome in the setting and offered no stress to people requiring her to be paid.

As time went by Rachel skills were recognised and from time to time she is paid for work she does and she is delighted. The great thing about this for us and for her is her life is full and we seem never to have to worry about what she will be doing next week.We are however the constant taxi driver and need to be ever vigilant to note the next door waiting to be opened.

I do not know if she will ever get a full time paid job but she has learnt about the work ethic and thankfully appraoches each new opportunity with enthusiasm .

I am sure this is letting employers off the hook but for Rachel her life is full of work, sometimes very demanding but also rewarding and with no one giving her the charity vote

Miriam

 


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales reminded me of a situation we had with Ben. He was doing some work experience with a house cleaning team.  House cleaning is the least thing he would be interested in doing so it was doomed from the beginning!  (another thing to keep in mind......not to set up for failure by doing things that Dan has no interest in).  Well, the person in charge rang me to tell me that Ben was not doing at all well and that 'people like him' do best collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the conversation ended very quickly.  That person actually apologised about five years later after he heard how well Ben was doing in his job as an admin assistant.   When suggestions like this are put forward, I now realise that there is no point into putting effort and time into these people....they are wasting Ben's time.   Surround yourself and Dan with people who believe in what you want to achieve and do not have their own agendas.  Ben has had his job for 19 years and is taking his second lot of long service leave in August.  It hasn't been without its worrying times, but what I now realise is that most of the problems were caused by other people and not by Ben.  It is so easy to fall into "it must be the person who has the disability" as the problem and then as the parent, try to fix the problem  by trying to 'fix' our son or daughter.  It is also good cop out stuff for some people so that they don't have to put in more effort.  Hopefully I have learned to be a bit more circumspect.  These issues are similar to school issues when inclusion is not the real agenda.  It has all been worth every bit of worry, effort etc as Ben's life is so rich with all the contact he has in community and the knowledge that 'ordinary' people have learned from his community presence.
Best Wishes
Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote:




Thanks so much Jill and Maureen for your support, I appreciated the stories Maureen of the difficulties and am taking note for future reference, I had to laugh at the possible ?Logging in the Otways? job and can see how ridiculous it can get and how important it is to keep a sense of humour.  The agencies here will not support Dan because of his disabilities ? they have all this criteria that he has to fit in to for him to be helped, so have known for many years that we will have to find him jobs ourselves ? I so understand the comment about ?it being too difficult for them?, it?s an internal battle I?ve had for many years, even about the schooling.  Am going to make a big effort to take on your advice Jill, to be positive and raise my expectations.   
 
They are going to make up Dan?s resume in his IT class, he will be doing it ? they came up with this idea themselves.  I think I may have finally gotten the knack of planting seeds in a certain way where they are coming up with the ideas.  It?s only taken me 12 years!!  I couldn?t believe how the meeting went with the enthusiasm and ideas flowing ? more than I could come up with on my own. 
 
I would like to print off your emails to share with school if you are ok with that.
 
Thanks again
Jo
 


From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in something like that.

We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension.

I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.

 

I drove some video organizations mad with "Please let her work here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen


----- Original Message -----

From: Family Voices

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 
Hi There Everyone,
 
I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT ? lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work. 
 
During the meeting I said that I felt it?s important we use the right language and that we don?t set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn?t mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.
 
Looking forward to hearing from you.
Jo
 


__________ Information from ESET NOD32 Antivirus, version of virus signature database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

_________________________________________________________________
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From familyvoices at inpress.pledgonline.com  Thu Jun 25 21:49:45 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 14:49:45 +1000
Subject: FV: Jo seeking help
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au>
	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>
	<COL117-W305B50733734D2DEBD34FAD2350@phx.gbl>
Message-ID: <482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>

Your wise words Miriam are almost exactly what we have here with Lauren.
Her voluntary position is as important as any paid position. We have emphasised her pension is given to her and for that she should contribute to the world. She can understand that. She is a happy volunteer, She is actually very proud of it and wouldn't hear of anyone underestimating it. When a paid job comes along it is all a bonus.
As for her paid position at the market. She has usually spent the pay before she leaves the market! Talk about "put back!"
But it is her money and hard earned.
Maureen

  ----- Original Message ----- 
  From: Family Voices 
  To: family voices 
  Sent: Friday, June 26, 2009 2:28 PM
  Subject: Re: FV: Jo seeking help


  Jo all these messages to you make me feel really guilty about getting work for Rachel . We did start to go down that journey when she first left school and like many found it all so depressing. The jobs  we managed to get her into were tokenism and did not last or were simply things she did not enjoy doing."I am not cleaning out bird cages" and it was all greatly upseting for her.
  So we took another path. We first of all helped Rachel to understand that she did get a pension each week and therefore was assured of an income. However this was like being paid and she was expected(by us) to be willing to put something back into the community.
  We did not care what it was but she needed to go out of the house several days a week to do something, This could be a Gym session ,typing and helping with the children at the day care centre, typing for the Salvation army, offering to set up and clear up for a sporting or social club. dance lesson , walking a friends dogs. a TAFE course. It did not matter what it was. Some of these things she needed someone with her and some she did not
  What was important for us was that she gained a good feeling about giving back and not just taking her pension for granted and doing nothing.
  The activities she took on were ones which followed her interest and so she was fully committed to them . This enabled  her to be welcome in the setting and offered no stress to people requiring her to be paid.
  As time went by Rachel skills were recognised and from time to time she is paid for work she does and she is delighted. The great thing about this for us and for her is her life is full and we seem never to have to worry about what she will be doing next week.We are however the constant taxi driver and need to be ever vigilant to note the next door waiting to be opened.
  I do not know if she will ever get a full time paid job but she has learnt about the work ethic and thankfully appraoches each new opportunity with enthusiasm .
  I am sure this is letting employers off the hook but for Rachel her life is full of work, sometimes very demanding but also rewarding and with no one giving her the charity vote
  Miriam
   

------------------------------------------------------------------------------
  To: familyvoices at inpress.pledgonline.com
  Date: Fri, 26 Jun 2009 12:31:18 +0930
  From: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Jo seeking help

  OK about the forwarding my email Jo.  You are already doing the positive stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales reminded me of a situation we had with Ben. He was doing some work experience with a house cleaning team.  House cleaning is the least thing he would be interested in doing so it was doomed from the beginning!  (another thing to keep in mind......not to set up for failure by doing things that Dan has no interest in).  Well, the person in charge rang me to tell me that Ben was not doing at all well and that 'people like him' do best collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the conversation ended very quickly.  That person actually apologised about five years later after he heard how well Ben was doing in his job as an admin assistant.   When suggestions like this are put forward, I now realise that there is no point into putting effort and time into these people....they are wasting Ben's time.   Surround yourself and Dan with people who believe in what you want to achieve and do not have their own agendas.  Ben has had his job for 19 years and is taking his second lot of long service leave in August.  It hasn't been without its worrying times, but what I now realise is that most of the problems were caused by other people and not by Ben.  It is so easy to fall into "it must be the person who has the disability" as the problem and then as the parent, try to fix the problem  by trying to 'fix' our son or daughter.  It is also good cop out stuff for some people so that they don't have to put in more effort.  Hopefully I have learned to be a bit more circumspect.  These issues are similar to school issues when inclusion is not the real agenda.  It has all been worth every bit of worry, effort etc as Ben's life is so rich with all the contact he has in community and the knowledge that 'ordinary' people have learned from his community presence. 
  Best Wishes
  Jill

  On 26/06/2009, at 10:37 AM, Family Voices wrote: 


    Thanks so much Jill and Maureen for your support, I appreciated the stories Maureen of the difficulties and am taking note for future reference, I had to laugh at the possible ?Logging in the Otways? job and can see how ridiculous it can get and how important it is to keep a sense of humour.  The agencies here will not support Dan because of his disabilities ? they have all this criteria that he has to fit in to for him to be helped, so have known for many years that we will have to find him jobs ourselves ? I so understand the comment about ?it being too difficult for them?, it?s an internal battle I?ve had for many years, even about the schooling.  Am going to make a big effort to take on your advice Jill, to be positive and raise my expectations.   

    They are going to make up Dan?s resume in his IT class, he will be doing it ? they came up with this idea themselves.  I think I may have finally gotten the knack of planting seeds in a certain way where they are coming up with the ideas.  It?s only taken me 12 years!!  I couldn?t believe how the meeting went with the enthusiasm and ideas flowing ? more than I could come up with on my own. 

    I would like to print off your emails to share with school if you are ok with that.

    Thanks again
    Jo

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Friday, 26 June 2009 8:36 AM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Jo seeking help

    Hi Jo
    We have had a fair bit of experience with what you are going through.
    The CV is a great start,
    Lauren's interest is film, theatre and TV and celebrities.
    So we started trying to find a position where she could be involved in something like that.
    We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.
    There are plenty of learning's here.
    One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.

    Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 

    This position was paid a normal wage.
    However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension.
    I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.
    The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.

    I could go on and on and on Jo.
    We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.

    She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.
    I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.
    After the chainsaw incident, we took Lauren away from the organization and went it alone completely.

    It was allot of hard work for me.

    Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.

    I drove some video organizations mad with "Please let her work here!"requests.
    Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!

    I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!


    She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.
    She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.

    I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.

    Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.

    No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.

    So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.

    Good luck Jo.
    It's a long and interesting road.
    Maureen
      ----- Original Message -----
      From: Family Voices
      To: familyvoices at inpress.pledgonline.com
      Sent: Friday, June 26, 2009 8:09 AM
      Subject: FV: Jo seeking help

      Hi There Everyone,

      I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT ? lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work. 

      During the meeting I said that I felt it?s important we use the right language and that we don?t set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn?t mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.

      Looking forward to hearing from you.
      Jo



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From familyvoices at inpress.pledgonline.com  Thu Jun 25 23:53:20 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 16:23:20 +0930
Subject: FV: Jo seeking help
In-Reply-To: <482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au>
	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>
	<COL117-W305B50733734D2DEBD34FAD2350@phx.gbl>
	<482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>
Message-ID: <383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>


Yes, a sense of worth is the critical and most important outcome.   
Ben's paid employment for 19 hours/week across five days is  
complemented with two half days of voluntary work.  He is a community  
bus assistant one afternoon where he assists elderly passengers on and  
off the bus  with their parcels and helps with reshelving in the  
Library another afternoon.  Both these unpaid jobs contribute to his  
self worth and bring him into contact with  community.  I don't think  
working full time in his paid work would work for Ben even if it was  
offered.  The bus job is the one where he feels that he is  
contributing most and the passengers give him chocolates for  
Christmas!  The job he enjoys most is the Library and I don't know  
why.   Although he enjoys his paid work to a point, it depends on who  
he is working with.  The times it has been difficult are when he has  
been working with people who have not been supportive or inclusive.   
He does not verbalise this but  when it is happening  he gets into  
some unacceptable behaviour at work and develops some strong obsessive  
compulsive behaviours.  This has been the really hard stuff to work  
through as work decided that these behaviours are part of his  
disability and not a result of his environment.  There have been many  
times when I considered him leaving, but knowing the difficulty he  
would have in getting other activities to fill his day enjoyably, it  
would add to his feelings of low self esteem.  Another activity which  
adds to his sense of importance is going to his 87 year old  
grandmother's once a week for dinner and stay the night.  He says he  
goes there to take his grandfather's place and look after her.  It has  
been a great joy to see their relationship develop over the past  
couple of years as my mother , although loving him dearly,  has always  
thought of him as a little boy with no regard for his adulthood.  Now,  
she looks forward to his stay, spends all day cooking for him (4  
courses) and says she has the best night's sleep when he is there. He  
also brings home a left over meal, which he pointedly says to me the  
next night "I have my own meal tonight"  Love it!  The balance is fine  
at the moment but daren't take my eye off it.
Jill




> Your wise words Miriam are almost exactly what we have here with  
> Lauren.
> Her voluntary position is as important as any paid position. We have  
> emphasised her pension is given to her and for that she should  
> contribute to the world. She can understand that. She is a happy  
> volunteer, She is actually very proud of it and wouldn't hear of  
> anyone underestimating it. When a paid job comes along it is all a  
> bonus.
> As for her paid position at the market. She has usually spent the  
> pay before she leaves the market! Talk about "put back!"
> But it is her money and hard earned.
> Maureen
>
> ----- Original Message -----
> From: Family Voices
> To: family voices
> Sent: Friday, June 26, 2009 2:28 PM
> Subject: Re: FV: Jo seeking help
>
> Jo all these messages to you make me feel really guilty about  
> getting work for Rachel . We did start to go down that journey when  
> she first left school and like many found it all so depressing. The  
> jobs  we managed to get her into were tokenism and did not last or  
> were simply things she did not enjoy doing."I am not cleaning out  
> bird cages" and it was all greatly upseting for her.
> So we took another path. We first of all helped Rachel to understand  
> that she did get a pension each week and therefore was assured of an  
> income. However this was like being paid and she was expected(by us)  
> to be willing to put something back into the community.
> We did not care what it was but she needed to go out of the house  
> several days a week to do something, This could be a Gym  
> session ,typing and helping with the children at the day care  
> centre, typing for the Salvation army, offering to set up and clear  
> up for a sporting or social club. dance lesson , walking a friends  
> dogs. a TAFE course. It did not matter what it was. Some of these  
> things she needed someone with her and some she did not
> What was important for us was that she gained a good feeling about  
> giving back and not just taking her pension for granted and doing  
> nothing.
> The activities she took on were ones which followed her interest and  
> so she was fully committed to them . This enabled  her to be welcome  
> in the setting and offered no stress to people requiring her to be  
> paid.
> As time went by Rachel skills were recognised and from time to time  
> she is paid for work she does and she is delighted. The great thing  
> about this for us and for her is her life is full and we seem never  
> to have to worry about what she will be doing next week.We are  
> however the constant taxi driver and need to be ever vigilant to  
> note the next door waiting to be opened.
> I do not know if she will ever get a full time paid job but she has  
> learnt about the work ethic and thankfully appraoches each new  
> opportunity with enthusiasm .
> I am sure this is letting employers off the hook but for Rachel her  
> life is full of work, sometimes very demanding but also rewarding  
> and with no one giving her the charity vote
> Miriam
>
> To: familyvoices at inpress.pledgonline.com
> Date: Fri, 26 Jun 2009 12:31:18 +0930
> From: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Jo seeking help
>
> OK about the forwarding my email Jo.  You are already doing the  
> positive stuff  as the meeting wouldn't have gone the way it did!   
> Maureen's tales reminded me of a situation we had with Ben. He was  
> doing some work experience with a house cleaning team.  House  
> cleaning is the least thing he would be interested in doing so it  
> was doomed from the beginning!  (another thing to keep in  
> mind......not to set up for failure by doing things that Dan has no  
> interest in).  Well, the person in charge rang me to tell me that  
> Ben was not doing at all well and that 'people like him' do best  
> collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!   
> Needless to say the conversation ended very quickly.  That person  
> actually apologised about five years later after he heard how well  
> Ben was doing in his job as an admin assistant.   When suggestions  
> like this are put forward, I now realise that there is no point into  
> putting effort and time into these people....they are wasting Ben's  
> time.   Surround yourself and Dan with people who believe in what  
> you want to achieve and do not have their own agendas.  Ben has had  
> his job for 19 years and is taking his second lot of long service  
> leave in August.  It hasn't been without its worrying times, but  
> what I now realise is that most of the problems were caused by other  
> people and not by Ben.  It is so easy to fall into "it must be the  
> person who has the disability" as the problem and then as the  
> parent, try to fix the problem  by trying to 'fix' our son or  
> daughter.  It is also good cop out stuff for some people so that  
> they don't have to put in more effort.  Hopefully I have learned to  
> be a bit more circumspect.  These issues are similar to school  
> issues when inclusion is not the real agenda.  It has all been worth  
> every bit of worry, effort etc as Ben's life is so rich with all the  
> contact he has in community and the knowledge that 'ordinary' people  
> have learned from his community presence.
> Best Wishes
> Jill
> On 26/06/2009, at 10:37 AM, Family Voices wrote:
>
> Thanks so much Jill and Maureen for your support, I appreciated the  
> stories Maureen of the difficulties and am taking note for future  
> reference, I had to laugh at the possible ?Logging in the Otways?  
> job and can see how ridiculous it can get and how important it is to  
> keep a sense of humour.  The agencies here will not support Dan  
> because of his disabilities ? they have all this criteria that he  
> has to fit in to for him to be helped, so have known for many years  
> that we will have to find him jobs ourselves ? I so understand the  
> comment about ?it being too difficult for them?, it?s an internal  
> battle I?ve had for many years, even about the schooling.  Am going  
> to make a big effort to take on your advice Jill, to be positive and  
> raise my expectations.
>
> They are going to make up Dan?s resume in his IT class, he will be  
> doing it ? they came up with this idea themselves.  I think I may  
> have finally gotten the knack of planting seeds in a certain way  
> where they are coming up with the ideas.  It?s only taken me 12  
> years!!  I couldn?t believe how the meeting went with the enthusiasm  
> and ideas flowing ? more than I could come up with on my own.
>
> I would like to print off your emails to share with school if you  
> are ok with that.
>
> Thanks again
> Jo
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Friday, 26 June 2009 8:36 AM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Jo seeking help
>
> Hi Jo
> We have had a fair bit of experience with what you are going through.
> The CV is a great start,
> Lauren's interest is film, theatre and TV and celebrities.
> So we started trying to find a position where she could be involved  
> in something like that.
> We went totally mainstream, and the only thing that was different  
> from any other young person going for a position is that she had a  
> support worker with her.
> There are plenty of learning's here.
> One theatre that she went to took all her information and she filled  
> out "The form"and they said the next step would be a phone  
> interview! Well, that did happen when I wasn't home and, quiet  
> honestly, Lauren sounds more like a 10 year old than an (at the  
> time) 18 year old when she is on the phone. After that they wrote to  
> her and said don't bother EVER applying to our theatre again! She  
> was devastated and so was I. We took a big step back. I have since  
> heard that allot of places do a first interview on the phone and  
> once you get past that you get to the next round.
>
> Next theatre Lauren got the position fair and square and the  
> management were most acceptable and actually surprised me at how  
> accepting they were. However, under the manager came the regular  
> staff, who had no idea how to work with someone with a disability.  
> The support worker went with her and she was selling programs at the  
> theatre entrance. The podium she was to stand on was dangerous for  
> her and she had to balance her books! The support worker was on the  
> ball and Lauren was working very hard. However 4 hours on her feet  
> standing on a small platform is physically too much for her and they  
> offered her a job ion the cloakroom. That was fine,only when I went  
> to pick her up she was sitting in what looked like a cupboard! She  
> was so miserable as she had been there for 4 hours and spoken to no  
> one and was terribly concerned she had got things (Peoples  
> belongings) mixed up!I couldn't get her to go back she was so  
> stressed! The support worker couldn't fit in the cupboard so  
> wandered around the theatre.
>
> This position was paid a normal wage.
> However, even though meagre, I had to report it to Centrelink every  
> fortnight, even if she didn't get a shift and it never incringed on  
> her pension.
> I was so worried about phoning them on the right day at the right  
> time, it became a big bug bare! I did it and hated it. Lauren  
> couldn't possibly manage that part of it so it all became my  
> responsibility and I am trying to step back out of her life not take  
> on more responsibility. So just be aware of the Centrelink  
> responsibility.
> The learning's in this experience is, that we should have supported  
> the organization better and perhaps they could have supported Lauren  
> better. I always felt the management wanted to but didn't know how,  
> and I wasn't confident enough to approach them - I kept thinking  
> that Lauren would be too difficult for them so they wouldn't take  
> her on. I think I was wrong.
>
> I could go on and on and on Jo.
> We have had 7 years of interviews and let downs and it has been  
> terribly difficult to keep Lauren's morale high.
>
> She was offered a traineeship through a government job seeking  
> organization. The young woman who was assisting Lauren to find a job  
> would get Lauren all excited every Monday when the jobs were given  
> to the organization. Lauren would always phone me from the place  
> with much excitement about working at McDonalds clearing tables or  
> Hungry Jacks serving customers (All things she couldn't physically  
> do) and then one day in much excitement she was told she was  
> eligible for a traineeship and it was for "Logging in the  
> Otways"...I very calmly spoke to the young woman who was helping  
> Lauren and explained Lauren can't use a chainsaw. The young lady had  
> no idea what "Logging in the Otways"meant. - in case you don't know  
> what the Otways is, it is a mountain range near the great ocean road  
> in Victoria.
> I am only telling you this Jo, because if we didn't keep a sense of  
> humour we would have gone in sane during our efforts to assist Lauren.
> After the chainsaw incident, we took Lauren away from the  
> organization and went it alone completely.
>
> It was allot of hard work for me.
>
> Lauren had work experience at a video store when she was at school.  
> Infact she had three lots of work experience at three different  
> stores and she was very good at re winding videos and selecting the  
> movies for in house and dusting shelves.
>
> I drove some video organizations mad with "Please let her work  
> here!"requests.
> Video Easy put an interesting flyer in our letterbox that looked  
> like a wanted poster. At the time they were looking for customers.  
> We have a printing business, so I took it to work and made it look  
> like a wanted poster for Lauren looking for a job at Video Easy and  
> I sent it back to their head office and every video easy store near  
> our home. I thought it was very clever, but no one from Video Easy  
> answered the request!
>
> I spoke for hours to the HR people at Blockbuster. I got them all  
> sorts of information about employing people with a disability.  
> Lauren would be very happy working one shift a week. That's probably  
> all she could have done. I was told they don't promise any of their  
> staff a shift so it would be discrimination against all the other  
> employees!!
>
>
> She now has a voluntary position as an usher in a cinema. She loves  
> it. She is very valued by the organization she works for and she has  
> flexibility around her health and her ability.
> She also has a paid job at a farmers market where she works in the  
> citrus stall handing out samples of fruit and making orange juice.  
> She is learning to serve customers. That is only once a month.
>
> I could go on and on....some good people, some terrible, some really  
> "get it"others haven't got a clue.
>
> Now Lauren is 8 years out of school, what I notice around the group  
> of friends who left school at the same time is..The ones who's  
> parents have really assisted with job hunting, have got somewhere,  
> and those who's parents can't find the time to assist them and go to  
> interviews with them, well, those young ones are still on the "job  
> training wheel" or work in disability training programs or the  
> workshops type places.
>
> No one comes knocking at your door saying "I have a job for Dan" you  
> have to be out there and searching for it.
>
> So my suggestion is..........Be creative, make sure he has good  
> support, make sure the organization he works with are well supported  
> too, and that their staff are patient and caring. Try not to let all  
> the knockbacks get you down and I hope you don't have too many of  
> them.
>
> Good luck Jo.
> It's a long and interesting road.
> Maureen
> ----- Original Message -----
> From: Family Voices
> To: familyvoices at inpress.pledgonline.com
> Sent: Friday, June 26, 2009 8:09 AM
> Subject: FV: Jo seeking help
>
> Hi There Everyone,
>
> I had a meeting with the school today about Daniels Work Placement  
> (used to be called Work Experience when I was at school).  Anyhow  
> they want to do up a Resume with Daniel in IT ? lots of photos of  
> Dan doing things that could potentially fit in with a work  
> situation.   When the Resume is complete Daniel and his Aide will  
> take it around to businesses we have identified as being suitable  
> places for him to work.
>
> During the meeting I said that I felt it?s important we use the  
> right language and that we don?t set Daniel up to be a charitable  
> project.  I said that some people may initially have Daniel work for  
> them for charitable reasons but if we use positive language along  
> with them getting to know Dan this attitude has potential to shift  
> as I have seen occur in other areas of his life.  The people I met  
> with today were really keen to understand the correct language to  
> use when introducing Dan to potential employers and asked me to  
> provide them with information.  I am still struggling with the  
> correct language myself and would love it if you could suggest ways  
> of how we first introduce Dan and so on.  If anyone has done a  
> Resume and wouldn?t mind sharing we would find it very useful.  And  
> anything else you can think of to help Dan expand his work experience.
>
> Looking forward to hearing from you.
> Jo
>
>
>
> __________ Information from ESET NOD32 Antivirus, version of virus  
> signature database 4188 (20090625) __________
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From familyvoices at inpress.pledgonline.com  Fri Jun 26 00:11:22 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 17:11:22 +1000
Subject: FV: Jo seeking help
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au><F1053067-5319-4680-AF09-C4765E401843@aapt.net.au><COL117-W305B50733734D2DEBD34FAD2350@phx.gbl><482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>
	<383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>
Message-ID: <428D9BDA3296401AAFB38FC0494D743F@D8XYGK1S>

This is so wonderful Jill and to hear and learn how things are working for you. I am always watching those who are a few steps ahead of us.
Even though Lauren's position at the theatre is usually terrific, there is always the chance someone else is rostered on (Paid employee) and they just don't get it. She has had a few occasions where she hasn't been accepted. She usually tells us by starting the conversation with "I didn't cry,  but...."  My heart bleeds!!! . However, I have told her she has to sort it out with the staff and the co-ordinator of volunteers. It's tough, but I don't go and sort out her siblings problems at their work! That has made a big impact and she tries to battle on. I usually assist with an email or phone call, but these times are getting further apart, so she is either handling situations better, or they aren't happening as much.
A wise old physio told me when Lauren was very small, that life is easy for disabled children and really tough for disabled adults. The older Lauren gets the more this has become true. but she is tough too. and resilient and strong........and so am I
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Friday, June 26, 2009 4:53 PM
  Subject: Re: FV: Jo seeking help




  Yes, a sense of worth is the critical and most important outcome.  Ben's paid employment for 19 hours/week across five days is complemented with two half days of voluntary work.  He is a community bus assistant one afternoon where he assists elderly passengers on and off the bus  with their parcels and helps with reshelving in the Library another afternoon.  Both these unpaid jobs contribute to his self worth and bring him into contact with  community.  I don't think working full time in his paid work would work for Ben even if it was offered.  The bus job is the one where he feels that he is contributing most and the passengers give him chocolates for Christmas!  The job he enjoys most is the Library and I don't know why.   Although he enjoys his paid work to a point, it depends on who he is working with.  The times it has been difficult are when he has been working with people who have not been supportive or inclusive.  He does not verbalise this but  when it is happening  he gets into some unacceptable behaviour at work and develops some strong obsessive compulsive behaviours.  This has been the really hard stuff to work through as work decided that these behaviours are part of his disability and not a result of his environment.  There have been many times when I considered him leaving, but knowing the difficulty he would have in getting other activities to fill his day enjoyably, it would add to his feelings of low self esteem.  Another activity which adds to his sense of importance is going to his 87 year old grandmother's once a week for dinner and stay the night.  He says he goes there to take his grandfather's place and look after her.  It has been a great joy to see their relationship develop over the past couple of years as my mother , although loving him dearly,  has always thought of him as a little boy with no regard for his adulthood.  Now, she looks forward to his stay, spends all day cooking for him (4 courses) and says she has the best night's sleep when he is there. He also brings home a left over meal, which he pointedly says to me the next night "I have my own meal tonight"  Love it!  The balance is fine at the moment but daren't take my eye off it.
  Jill








    Your wise words Miriam are almost exactly what we have here with Lauren.
    Her voluntary position is as important as any paid position. We have emphasised her pension is given to her and for that she should contribute to the world. She can understand that. She is a happy volunteer, She is actually very proud of it and wouldn't hear of anyone underestimating it. When a paid job comes along it is all a bonus.
    As for her paid position at the market. She has usually spent the pay before she leaves the market! Talk about "put back!"
    But it is her money and hard earned.
    Maureen

      ----- Original Message -----
      From: Family Voices
      To: family voices
      Sent: Friday, June 26, 2009 2:28 PM
      Subject: Re: FV: Jo seeking help


      Jo all these messages to you make me feel really guilty about getting work for Rachel . We did start to go down that journey when she first left school and like many found it all so depressing. The jobs  we managed to get her into were tokenism and did not last or were simply things she did not enjoy doing."I am not cleaning out bird cages" and it was all greatly upseting for her.
      So we took another path. We first of all helped Rachel to understand that she did get a pension each week and therefore was assured of an income. However this was like being paid and she was expected(by us) to be willing to put something back into the community.
      We did not care what it was but she needed to go out of the house several days a week to do something, This could be a Gym session ,typing and helping with the children at the day care centre, typing for the Salvation army, offering to set up and clear up for a sporting or social club. dance lesson , walking a friends dogs. a TAFE course. It did not matter what it was. Some of these things she needed someone with her and some she did not
      What was important for us was that she gained a good feeling about giving back and not just taking her pension for granted and doing nothing.
      The activities she took on were ones which followed her interest and so she was fully committed to them . This enabled  her to be welcome in the setting and offered no stress to people requiring her to be paid.
      As time went by Rachel skills were recognised and from time to time she is paid for work she does and she is delighted. The great thing about this for us and for her is her life is full and we seem never to have to worry about what she will be doing next week.We are however the constant taxi driver and need to be ever vigilant to note the next door waiting to be opened.
      I do not know if she will ever get a full time paid job but she has learnt about the work ethic and thankfully appraoches each new opportunity with enthusiasm .
      I am sure this is letting employers off the hook but for Rachel her life is full of work, sometimes very demanding but also rewarding and with no one giving her the charity vote
      Miriam
       

--------------------------------------------------------------------------
      To: familyvoices at inpress.pledgonline.com
      Date: Fri, 26 Jun 2009 12:31:18 +0930
      From: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Jo seeking help

      OK about the forwarding my email Jo.  You are already doing the positive stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales reminded me of a situation we had with Ben. He was doing some work experience with a house cleaning team.  House cleaning is the least thing he would be interested in doing so it was doomed from the beginning!  (another thing to keep in mind......not to set up for failure by doing things that Dan has no interest in).  Well, the person in charge rang me to tell me that Ben was not doing at all well and that 'people like him' do best collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the conversation ended very quickly.  That person actually apologised about five years later after he heard how well Ben was doing in his job as an admin assistant.   When suggestions like this are put forward, I now realise that there is no point into putting effort and time into these people....they are wasting Ben's time.   Surround yourself and Dan with people who believe in what you want to achieve and do not have their own agendas.  Ben has had his job for 19 years and is taking his second lot of long service leave in August.  It hasn't been without its worrying times, but what I now realise is that most of the problems were caused by other people and not by Ben.  It is so easy to fall into "it must be the person who has the disability" as the problem and then as the parent, try to fix the problem  by trying to 'fix' our son or daughter.  It is also good cop out stuff for some people so that they don't have to put in more effort.  Hopefully I have learned to be a bit more circumspect.  These issues are similar to school issues when inclusion is not the real agenda.  It has all been worth every bit of worry, effort etc as Ben's life is so rich with all the contact he has in community and the knowledge that 'ordinary' people have learned from his community presence.
      Best Wishes
      Jill

      On 26/06/2009, at 10:37 AM, Family Voices wrote:


        Thanks so much Jill and Maureen for your support, I appreciated the stories Maureen of the difficulties and am taking note for future reference, I had to laugh at the possible ?Logging in the Otways? job and can see how ridiculous it can get and how important it is to keep a sense of humour.  The agencies here will not support Dan because of his disabilities ? they have all this criteria that he has to fit in to for him to be helped, so have known for many years that we will have to find him jobs ourselves ? I so understand the comment about ?it being too difficult for them?, it?s an internal battle I?ve had for many years, even about the schooling.  Am going to make a big effort to take on your advice Jill, to be positive and raise my expectations.   

        They are going to make up Dan?s resume in his IT class, he will be doing it ? they came up with this idea themselves.  I think I may have finally gotten the knack of planting seeds in a certain way where they are coming up with the ideas.  It?s only taken me 12 years!!  I couldn?t believe how the meeting went with the enthusiasm and ideas flowing ? more than I could come up with on my own. 

        I would like to print off your emails to share with school if you are ok with that.

        Thanks again
        Jo

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Friday, 26 June 2009 8:36 AM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Jo seeking help

        Hi Jo
        We have had a fair bit of experience with what you are going through.
        The CV is a great start,
        Lauren's interest is film, theatre and TV and celebrities.
        So we started trying to find a position where she could be involved in something like that.
        We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.
        There are plenty of learning's here.
        One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.

        Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 

        This position was paid a normal wage.
        However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension.
        I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.
        The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.

        I could go on and on and on Jo.
        We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.

        She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.
        I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.
        After the chainsaw incident, we took Lauren away from the organization and went it alone completely.

        It was allot of hard work for me.

        Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.

        I drove some video organizations mad with "Please let her work here!"requests.
        Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!

        I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!


        She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.
        She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.

        I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.

        Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.

        No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.

        So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.

        Good luck Jo.
        It's a long and interesting road.
        Maureen
          ----- Original Message -----
          From: Family Voices
          To: familyvoices at inpress.pledgonline.com
          Sent: Friday, June 26, 2009 8:09 AM
          Subject: FV: Jo seeking help

          Hi There Everyone,

          I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT ? lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work. 

          During the meeting I said that I felt it?s important we use the right language and that we don?t set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn?t mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.

          Looking forward to hearing from you.
          Jo



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From familyvoices at inpress.pledgonline.com  Fri Jun 26 00:41:32 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 17:11:32 +0930
Subject: FV: Jo seeking help
In-Reply-To: <482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au>
	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>
	<COL117-W305B50733734D2DEBD34FAD2350@phx.gbl> 
	<482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>
Message-ID: <COL117-W4353EEE5F6AED07BF8610ED2350@phx.gbl>


Good to hear a similar story Maureen
I agree the money is always well spent and what an enjoyable activity that is for Rachel Miriam 


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 14:49:45 +1000
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help




Your wise words Miriam are almost exactly what we have here with Lauren.
Her voluntary position is as important as any paid position. We have emphasised her pension is given to her and for that she should contribute to the world. She can understand that. She is a happy volunteer, She is actually very proud of it and wouldn't hear of anyone underestimating it. When a paid job comes along it is all a bonus.
As for her paid position at the market. She has usually spent the pay before she leaves the market! Talk about "put back!"
But it is her money and hard earned.
Maureen
 

----- Original Message ----- 
From: Family Voices 
To: family voices 
Sent: Friday, June 26, 2009 2:28 PM
Subject: Re: FV: Jo seeking help

Jo all these messages to you make me feel really guilty about getting work for Rachel . We did start to go down that journey when she first left school and like many found it all so depressing. The jobs  we managed to get her into were tokenism and did not last or were simply things she did not enjoy doing."I am not cleaning out bird cages" and it was all greatly upseting for her.
So we took another path. We first of all helped Rachel to understand that she did get a pension each week and therefore was assured of an income. However this was like being paid and she was expected(by us) to be willing to put something back into the community.
We did not care what it was but she needed to go out of the house several days a week to do something, This could be a Gym session ,typing and helping with the children at the day care centre, typing for the Salvation army, offering to set up and clear up for a sporting or social club. dance lesson , walking a friends dogs. a TAFE course. It did not matter what it was. Some of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she was fully committed to them . This enabled  her to be welcome in the setting and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is paid for work she does and she is delighted. The great thing about this for us and for her is her life is full and we seem never to have to worry about what she will be doing next week.We are however the constant taxi driver and need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt about the work ethic and thankfully appraoches each new opportunity with enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is full of work, sometimes very demanding but also rewarding and with no one giving her the charity vote
Miriam
 


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales reminded me of a situation we had with Ben. He was doing some work experience with a house cleaning team.  House cleaning is the least thing he would be interested in doing so it was doomed from the beginning!  (another thing to keep in mind......not to set up for failure by doing things that Dan has no interest in).  Well, the person in charge rang me to tell me that Ben was not doing at all well and that 'people like him' do best collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the conversation ended very quickly.  That person actually apologised about five years later after he heard how well Ben was doing in his job as an admin assistant.   When suggestions like this are put forward, I now realise that there is no point into putting effort and time into these people....they are wasting Ben's time.   Surround yourself and Dan with people who believe in what you want to achieve and do not have their own agendas.  Ben has had his job for 19 years and is taking his second lot of long service leave in August.  It hasn't been without its worrying times, but what I now realise is that most of the problems were caused by other people and not by Ben.  It is so easy to fall into "it must be the person who has the disability" as the problem and then as the parent, try to fix the problem  by trying to 'fix' our son or daughter.  It is also good cop out stuff for some people so that they don't have to put in more effort.  Hopefully I have learned to be a bit more circumspect.  These issues are similar to school issues when inclusion is not the real agenda.  It has all been worth every bit of worry, effort etc as Ben's life is so rich with all the contact he has in community and the knowledge that 'ordinary' people have learned from his community presence. 
Best Wishes
Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote: 




Thanks so much Jill and Maureen for your support, I appreciated the stories Maureen of the difficulties and am taking note for future reference, I had to laugh at the possible ?Logging in the Otways? job and can see how ridiculous it can get and how important it is to keep a sense of humour.  The agencies here will not support Dan because of his disabilities ? they have all this criteria that he has to fit in to for him to be helped, so have known for many years that we will have to find him jobs ourselves ? I so understand the comment about ?it being too difficult for them?, it?s an internal battle I?ve had for many years, even about the schooling.  Am going to make a big effort to take on your advice Jill, to be positive and raise my expectations.   
 
They are going to make up Dan?s resume in his IT class, he will be doing it ? they came up with this idea themselves.  I think I may have finally gotten the knack of planting seeds in a certain way where they are coming up with the ideas.  It?s only taken me 12 years!!  I couldn?t believe how the meeting went with the enthusiasm and ideas flowing ? more than I could come up with on my own. 
 
I would like to print off your emails to share with school if you are ok with that.
 
Thanks again
Jo
 


From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in something like that.

We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension.

I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.

 

I drove some video organizations mad with "Please let her work here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen


----- Original Message -----

From: Family Voices

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 
Hi There Everyone,
 
I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT ? lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work. 
 
During the meeting I said that I felt it?s important we use the right language and that we don?t set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn?t mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.
 
Looking forward to hearing from you.
Jo
 


__________ Information from ESET NOD32 Antivirus, version of virus signature database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com



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From familyvoices at inpress.pledgonline.com  Fri Jun 26 00:58:36 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 15:58:36 +0800
Subject: FV: Jo seeking help
In-Reply-To: <428D9BDA3296401AAFB38FC0494D743F@D8XYGK1S>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au><F1053067-5319-4680-AF09-C4765E401843@aapt.net.au><COL117-W305B50733734D2DEBD34FAD2350@phx.gbl><482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>	<383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>
	<428D9BDA3296401AAFB38FC0494D743F@D8XYGK1S>
Message-ID: <002401c9f633$e932df00$bb989d00$@net.au>

You are all amazing, resilient, strong women along with your children, these
conversations are giving me so much - thank you beautiful people.

Love Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 3:11 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

This is so wonderful Jill and to hear and learn how things are working for
you. I am always watching those who are a few steps ahead of us.

Even though Lauren's position at the theatre is usually terrific, there is
always the chance someone else is rostered on (Paid employee) and they just
don't get it. She has had a few occasions where she hasn't been accepted.
She usually tells us by starting the conversation with "I didn't cry,
but...."  My heart bleeds!!! . However, I have told her she has to sort it
out with the staff and the co-ordinator of volunteers. It's tough, but I
don't go and sort out her siblings problems at their work! That has made a
big impact and she tries to battle on. I usually assist with an email or
phone call, but these times are getting further apart, so she is either
handling situations better, or they aren't happening as much.

A wise old physio told me when Lauren was very small, that life is easy for
disabled children and really tough for disabled adults. The older Lauren
gets the more this has become true. but she is tough too. and resilient and
strong........and so am I

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 26, 2009 4:53 PM

Subject: Re: FV: Jo seeking help

 

 

Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.

Jill

 

 

 

 

Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: family voices <mailto:familyvoices at inpress.pledgonline.com> 

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 

Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 


  _____  


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence. 

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote: 

 

Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   

 

They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 

 

I would like to print off your emails to share with school if you are ok
with that.

 

Thanks again

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in
something like that.

We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.

I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.

 

I drove some video organizations mad with "Please let her work
here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



__________ Information from ESET NOD32 Antivirus, version of virus signature
database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com <http://www.eset.com/> 

 

 


  _____  


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From familyvoices at inpress.pledgonline.com  Fri Jun 26 01:22:54 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 18:22:54 +1000
Subject: FV: Jo seeking help
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au><F1053067-5319-4680-AF09-C4765E401843@aapt.net.au><COL117-W305B50733734D2DEBD34FAD2350@phx.gbl><482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>	<383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au><428D9BDA3296401AAFB38FC0494D743F@D8XYGK1S>
	<002401c9f633$e932df00$bb989d00$@net.au>
Message-ID: <4D64FA02602344EC80C2CF3D8A7EC76F@D8XYGK1S>

Good luck Jo. I'll love to hear how it all goes for you and Dan.
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Friday, June 26, 2009 5:58 PM
  Subject: Re: FV: Jo seeking help


  You are all amazing, resilient, strong women along with your children, these conversations are giving me so much - thank you beautiful people.

  Love Jo

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Friday, 26 June 2009 3:11 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Jo seeking help

   

  This is so wonderful Jill and to hear and learn how things are working for you. I am always watching those who are a few steps ahead of us.

  Even though Lauren's position at the theatre is usually terrific, there is always the chance someone else is rostered on (Paid employee) and they just don't get it. She has had a few occasions where she hasn't been accepted. She usually tells us by starting the conversation with "I didn't cry,  but...."  My heart bleeds!!! . However, I have told her she has to sort it out with the staff and the co-ordinator of volunteers. It's tough, but I don't go and sort out her siblings problems at their work! That has made a big impact and she tries to battle on. I usually assist with an email or phone call, but these times are getting further apart, so she is either handling situations better, or they aren't happening as much.

  A wise old physio told me when Lauren was very small, that life is easy for disabled children and really tough for disabled adults. The older Lauren gets the more this has become true. but she is tough too. and resilient and strong........and so am I

  Maureen

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Friday, June 26, 2009 4:53 PM

    Subject: Re: FV: Jo seeking help

     

     

    Yes, a sense of worth is the critical and most important outcome.  Ben's paid employment for 19 hours/week across five days is complemented with two half days of voluntary work.  He is a community bus assistant one afternoon where he assists elderly passengers on and off the bus  with their parcels and helps with reshelving in the Library another afternoon.  Both these unpaid jobs contribute to his self worth and bring him into contact with  community.  I don't think working full time in his paid work would work for Ben even if it was offered.  The bus job is the one where he feels that he is contributing most and the passengers give him chocolates for Christmas!  The job he enjoys most is the Library and I don't know why.   Although he enjoys his paid work to a point, it depends on who he is working with.  The times it has been difficult are when he has been working with people who have not been supportive or inclusive.  He does not verbalise this but  when it is happening  he gets into some unacceptable behaviour at work and develops some strong obsessive compulsive behaviours.  This has been the really hard stuff to work through as work decided that these behaviours are part of his disability and not a result of his environment.  There have been many times when I considered him leaving, but knowing the difficulty he would have in getting other activities to fill his day enjoyably, it would add to his feelings of low self esteem.  Another activity which adds to his sense of importance is going to his 87 year old grandmother's once a week for dinner and stay the night.  He says he goes there to take his grandfather's place and look after her.  It has been a great joy to see their relationship develop over the past couple of years as my mother , although loving him dearly,  has always thought of him as a little boy with no regard for his adulthood.  Now, she looks forward to his stay, spends all day cooking for him (4 courses) and says she has the best night's sleep when he is there. He also brings home a left over meal, which he pointedly says to me the next night "I have my own meal tonight"  Love it!  The balance is fine at the moment but daren't take my eye off it.

    Jill

     

     

     

     

      Your wise words Miriam are almost exactly what we have here with Lauren.

      Her voluntary position is as important as any paid position. We have emphasised her pension is given to her and for that she should contribute to the world. She can understand that. She is a happy volunteer, She is actually very proud of it and wouldn't hear of anyone underestimating it. When a paid job comes along it is all a bonus.

      As for her paid position at the market. She has usually spent the pay before she leaves the market! Talk about "put back!"

      But it is her money and hard earned.

      Maureen

       

        ----- Original Message -----

        From: Family Voices

        To: family voices

        Sent: Friday, June 26, 2009 2:28 PM

        Subject: Re: FV: Jo seeking help

         

        Jo all these messages to you make me feel really guilty about getting work for Rachel . We did start to go down that journey when she first left school and like many found it all so depressing. The jobs  we managed to get her into were tokenism and did not last or were simply things she did not enjoy doing."I am not cleaning out bird cages" and it was all greatly upseting for her.
        So we took another path. We first of all helped Rachel to understand that she did get a pension each week and therefore was assured of an income. However this was like being paid and she was expected(by us) to be willing to put something back into the community.
        We did not care what it was but she needed to go out of the house several days a week to do something, This could be a Gym session ,typing and helping with the children at the day care centre, typing for the Salvation army, offering to set up and clear up for a sporting or social club. dance lesson , walking a friends dogs. a TAFE course. It did not matter what it was. Some of these things she needed someone with her and some she did not
        What was important for us was that she gained a good feeling about giving back and not just taking her pension for granted and doing nothing.
        The activities she took on were ones which followed her interest and so she was fully committed to them . This enabled  her to be welcome in the setting and offered no stress to people requiring her to be paid.
        As time went by Rachel skills were recognised and from time to time she is paid for work she does and she is delighted. The great thing about this for us and for her is her life is full and we seem never to have to worry about what she will be doing next week.We are however the constant taxi driver and need to be ever vigilant to note the next door waiting to be opened.
        I do not know if she will ever get a full time paid job but she has learnt about the work ethic and thankfully appraoches each new opportunity with enthusiasm .
        I am sure this is letting employers off the hook but for Rachel her life is full of work, sometimes very demanding but also rewarding and with no one giving her the charity vote
        Miriam
         


------------------------------------------------------------------------

        To: familyvoices at inpress.pledgonline.com
        Date: Fri, 26 Jun 2009 12:31:18 +0930
        From: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Jo seeking help

        OK about the forwarding my email Jo.  You are already doing the positive stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales reminded me of a situation we had with Ben. He was doing some work experience with a house cleaning team.  House cleaning is the least thing he would be interested in doing so it was doomed from the beginning!  (another thing to keep in mind......not to set up for failure by doing things that Dan has no interest in).  Well, the person in charge rang me to tell me that Ben was not doing at all well and that 'people like him' do best collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the conversation ended very quickly.  That person actually apologised about five years later after he heard how well Ben was doing in his job as an admin assistant.   When suggestions like this are put forward, I now realise that there is no point into putting effort and time into these people....they are wasting Ben's time.   Surround yourself and Dan with people who believe in what you want to achieve and do not have their own agendas.  Ben has had his job for 19 years and is taking his second lot of long service leave in August.  It hasn't been without its worrying times, but what I now realise is that most of the problems were caused by other people and not by Ben.  It is so easy to fall into "it must be the person who has the disability" as the problem and then as the parent, try to fix the problem  by trying to 'fix' our son or daughter.  It is also good cop out stuff for some people so that they don't have to put in more effort.  Hopefully I have learned to be a bit more circumspect.  These issues are similar to school issues when inclusion is not the real agenda.  It has all been worth every bit of worry, effort etc as Ben's life is so rich with all the contact he has in community and the knowledge that 'ordinary' people have learned from his community presence. 

        Best Wishes

        Jill

        On 26/06/2009, at 10:37 AM, Family Voices wrote: 

           

          Thanks so much Jill and Maureen for your support, I appreciated the stories Maureen of the difficulties and am taking note for future reference, I had to laugh at the possible "Logging in the Otways" job and can see how ridiculous it can get and how important it is to keep a sense of humour.  The agencies here will not support Dan because of his disabilities - they have all this criteria that he has to fit in to for him to be helped, so have known for many years that we will have to find him jobs ourselves - I so understand the comment about "it being too difficult for them", it's an internal battle I've had for many years, even about the schooling.  Am going to make a big effort to take on your advice Jill, to be positive and raise my expectations.   

           

          They are going to make up Dan's resume in his IT class, he will be doing it - they came up with this idea themselves.  I think I may have finally gotten the knack of planting seeds in a certain way where they are coming up with the ideas.  It's only taken me 12 years!!  I couldn't believe how the meeting went with the enthusiasm and ideas flowing - more than I could come up with on my own. 

           

          I would like to print off your emails to share with school if you are ok with that.

           

          Thanks again

          Jo

           

          From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
          Sent: Friday, 26 June 2009 8:36 AM
          To: familyvoices at inpress.pledgonline.com
          Subject: Re: FV: Jo seeking help

           

          Hi Jo

          We have had a fair bit of experience with what you are going through.

          The CV is a great start,

          Lauren's interest is film, theatre and TV and celebrities.

          So we started trying to find a position where she could be involved in something like that.

          We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.

          There are plenty of learning's here.

          One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.

           

          Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 

           

          This position was paid a normal wage.

          However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension.

          I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.

          The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.

           

          I could go on and on and on Jo.

          We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.

           

          She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.

          I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.

          After the chainsaw incident, we took Lauren away from the organization and went it alone completely.

           

          It was allot of hard work for me.

           

          Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.

           

          I drove some video organizations mad with "Please let her work here!"requests.

          Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!

           

          I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!

           

           

          She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.

          She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.

           

          I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.

           

          Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.

           

          No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.

           

          So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.

           

          Good luck Jo.

          It's a long and interesting road.

          Maureen

            ----- Original Message -----

            From: Family Voices

            To: familyvoices at inpress.pledgonline.com

            Sent: Friday, June 26, 2009 8:09 AM

            Subject: FV: Jo seeking help

             

            Hi There Everyone,

             

            I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT - lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work. 

             

            During the meeting I said that I felt it's important we use the right language and that we don't set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn't mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.

             

            Looking forward to hearing from you.

            Jo

             



            __________ Information from ESET NOD32 Antivirus, version of virus signature database 4188 (20090625) __________

            The message was checked by ESET NOD32 Antivirus.

            http://www.eset.com

         

         


------------------------------------------------------------------------

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From familyvoices at inpress.pledgonline.com  Fri Jun 26 01:49:47 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 18:49:47 +1000
Subject: FV: Discrimination in Alberta
Message-ID: <002e01c9f63b$0f7bba40$2e732ec0$@com>

Hi everyone,

Please check out this link and if you can, perhaps send an email to support
overturning the decision to exclude Hannah from travelling on the school
bus.  The email address of the chair of Elk Island School Division is:
Bonnie Riddell email: bonnie.riddell at ei.educ.ab.ca

Thanks

Anita

 

http://aacl.org/

 

 

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From familyvoices at inpress.pledgonline.com  Fri Jun 26 02:17:41 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 18:47:41 +0930
Subject: FV: Jo seeking help
In-Reply-To: <002401c9f633$e932df00$bb989d00$@net.au>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au><F1053067-5319-4680-AF09-C4765E401843@aapt.net.au><COL117-W305B50733734D2DEBD34FAD2350@phx.gbl><482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>
	<383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>
	<428D9BDA3296401AAFB38FC0494D743F@D8XYGK1S> 
	<002401c9f633$e932df00$bb989d00$@net.au>
Message-ID: <COL117-W404498924B98CC1F9FAA10D2350@phx.gbl>


Hi Jo just take it all slowly and go with your gut feeling after all it is Dan's emotional security which is the most important thing. If he feels good about his world that is what matters, and remember "if in doubt DON'T" good luck love Miriam
 


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 15:58:36 +0800
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help







You are all amazing, resilient, strong women along with your children, these conversations are giving me so much ? thank you beautiful people.
Love Jo
 


From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
Sent: Friday, 26 June 2009 3:11 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 

This is so wonderful Jill and to hear and learn how things are working for you. I am always watching those who are a few steps ahead of us.

Even though Lauren's position at the theatre is usually terrific, there is always the chance someone else is rostered on (Paid employee) and they just don't get it. She has had a few occasions where she hasn't been accepted. She usually tells us by starting the conversation with "I didn't cry,  but...."  My heart bleeds!!! . However, I have told her she has to sort it out with the staff and the co-ordinator of volunteers. It's tough, but I don't go and sort out her siblings problems at their work! That has made a big impact and she tries to battle on. I usually assist with an email or phone call, but these times are getting further apart, so she is either handling situations better, or they aren't happening as much.

A wise old physio told me when Lauren was very small, that life is easy for disabled children and really tough for disabled adults. The older Lauren gets the more this has become true. but she is tough too. and resilient and strong........and so am I

Maureen


----- Original Message ----- 

From: Family Voices 

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 26, 2009 4:53 PM

Subject: Re: FV: Jo seeking help

 
 


Yes, a sense of worth is the critical and most important outcome.  Ben's paid employment for 19 hours/week across five days is complemented with two half days of voluntary work.  He is a community bus assistant one afternoon where he assists elderly passengers on and off the bus  with their parcels and helps with reshelving in the Library another afternoon.  Both these unpaid jobs contribute to his self worth and bring him into contact with  community.  I don't think working full time in his paid work would work for Ben even if it was offered.  The bus job is the one where he feels that he is contributing most and the passengers give him chocolates for Christmas!  The job he enjoys most is the Library and I don't know why.   Although he enjoys his paid work to a point, it depends on who he is working with.  The times it has been difficult are when he has been working with people who have not been supportive or inclusive.  He does not verbalise this but  when it is happening  he gets into some unacceptable behaviour at work and develops some strong obsessive compulsive behaviours.  This has been the really hard stuff to work through as work decided that these behaviours are part of his disability and not a result of his environment.  There have been many times when I considered him leaving, but knowing the difficulty he would have in getting other activities to fill his day enjoyably, it would add to his feelings of low self esteem.  Another activity which adds to his sense of importance is going to his 87 year old grandmother's once a week for dinner and stay the night.  He says he goes there to take his grandfather's place and look after her.  It has been a great joy to see their relationship develop over the past couple of years as my mother , although loving him dearly,  has always thought of him as a little boy with no regard for his adulthood.  Now, she looks forward to his stay, spends all day cooking for him (4 courses) and says she has the best night's sleep when he is there. He also brings home a left over meal, which he pointedly says to me the next night "I have my own meal tonight"  Love it!  The balance is fine at the moment but daren't take my eye off it.

Jill

 

 

 

 



Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have emphasised her pension is given to her and for that she should contribute to the world. She can understand that. She is a happy volunteer, She is actually very proud of it and wouldn't hear of anyone underestimating it. When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 


----- Original Message -----

From: Family Voices

To: family voices

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 
Jo all these messages to you make me feel really guilty about getting work for Rachel . We did start to go down that journey when she first left school and like many found it all so depressing. The jobs  we managed to get her into were tokenism and did not last or were simply things she did not enjoy doing."I am not cleaning out bird cages" and it was all greatly upseting for her.
So we took another path. We first of all helped Rachel to understand that she did get a pension each week and therefore was assured of an income. However this was like being paid and she was expected(by us) to be willing to put something back into the community.
We did not care what it was but she needed to go out of the house several days a week to do something, This could be a Gym session ,typing and helping with the children at the day care centre, typing for the Salvation army, offering to set up and clear up for a sporting or social club. dance lesson , walking a friends dogs. a TAFE course. It did not matter what it was. Some of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she was fully committed to them . This enabled  her to be welcome in the setting and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is paid for work she does and she is delighted. The great thing about this for us and for her is her life is full and we seem never to have to worry about what she will be doing next week.We are however the constant taxi driver and need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt about the work ethic and thankfully appraoches each new opportunity with enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is full of work, sometimes very demanding but also rewarding and with no one giving her the charity vote
Miriam
 



To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales reminded me of a situation we had with Ben. He was doing some work experience with a house cleaning team.  House cleaning is the least thing he would be interested in doing so it was doomed from the beginning!  (another thing to keep in mind......not to set up for failure by doing things that Dan has no interest in).  Well, the person in charge rang me to tell me that Ben was not doing at all well and that 'people like him' do best collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the conversation ended very quickly.  That person actually apologised about five years later after he heard how well Ben was doing in his job as an admin assistant.   When suggestions like this are put forward, I now realise that there is no point into putting effort and time into these people....they are wasting Ben's time.   Surround yourself and Dan with people who believe in what you want to achieve and do not have their own agendas.  Ben has had his job for 19 years and is taking his second lot of long service leave in August.  It hasn't been without its worrying times, but what I now realise is that most of the problems were caused by other people and not by Ben.  It is so easy to fall into "it must be the person who has the disability" as the problem and then as the parent, try to fix the problem  by trying to 'fix' our son or daughter.  It is also good cop out stuff for some people so that they don't have to put in more effort.  Hopefully I have learned to be a bit more circumspect.  These issues are similar to school issues when inclusion is not the real agenda.  It has all been worth every bit of worry, effort etc as Ben's life is so rich with all the contact he has in community and the knowledge that 'ordinary' people have learned from his community presence. 

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote: 


 



Thanks so much Jill and Maureen for your support, I appreciated the stories Maureen of the difficulties and am taking note for future reference, I had to laugh at the possible ?Logging in the Otways? job and can see how ridiculous it can get and how important it is to keep a sense of humour.  The agencies here will not support Dan because of his disabilities ? they have all this criteria that he has to fit in to for him to be helped, so have known for many years that we will have to find him jobs ourselves ? I so understand the comment about ?it being too difficult for them?, it?s an internal battle I?ve had for many years, even about the schooling.  Am going to make a big effort to take on your advice Jill, to be positive and raise my expectations.   

 

They are going to make up Dan?s resume in his IT class, he will be doing it ? they came up with this idea themselves.  I think I may have finally gotten the knack of planting seeds in a certain way where they are coming up with the ideas.  It?s only taken me 12 years!!  I couldn?t believe how the meeting went with the enthusiasm and ideas flowing ? more than I could come up with on my own. 

 

I would like to print off your emails to share with school if you are ok with that.

 

Thanks again

Jo

 



From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 


Hi Jo


We have had a fair bit of experience with what you are going through.


The CV is a great start,


Lauren's interest is film, theatre and TV and celebrities.


So we started trying to find a position where she could be involved in something like that.


We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.


There are plenty of learning's here.


One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.


 


Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 


 


This position was paid a normal wage.


However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension.


I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.


The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.


 


I could go on and on and on Jo.


We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.


 


She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.


I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.


After the chainsaw incident, we took Lauren away from the organization and went it alone completely.


 


It was allot of hard work for me.


 


Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.


 


I drove some video organizations mad with "Please let her work here!"requests.


Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!


 


I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!


 


 


She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.


She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.


 


I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.


 


Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.


 


No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.


 


So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.


 


Good luck Jo.


It's a long and interesting road.


Maureen



----- Original Message -----


From: Family Voices


To: familyvoices at inpress.pledgonline.com


Sent: Friday, June 26, 2009 8:09 AM


Subject: FV: Jo seeking help


 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT ? lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work. 

 

During the meeting I said that I felt it?s important we use the right language and that we don?t set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn?t mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



__________ Information from ESET NOD32 Antivirus, version of virus signature database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com
 
 



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From familyvoices at inpress.pledgonline.com  Fri Jun 26 03:14:59 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Fri, 26 Jun 2009 19:44:59 +0930
Subject: FV: ***** SUSPECTED SPAM *****  Discrimination in Alberta
In-Reply-To: <002e01c9f63b$0f7bba40$2e732ec0$@com>
References: <002e01c9f63b$0f7bba40$2e732ec0$@com>
Message-ID: <F771E2BF-E4A8-4ECA-B0DD-AAF19B3A4C92@aapt.net.au>

Thanks for passing this on Anita.......sent an email - hope it acts as  
another little snowdrop on the bough!
Jill
On 26/06/2009, at 6:19 PM, Family Voices wrote:

> Hi everyone,
> Please check out this link and if you can, perhaps send an email to  
> support overturning the decision to exclude Hannah from travelling  
> on the school bus.  The email address of the chair of Elk Island  
> School Division is: Bonnie Riddell email: bonnie.riddell at ei.educ.ab.ca
> Thanks
> Anita
>
> http://aacl.org/
>
>

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From familyvoices at inpress.pledgonline.com  Fri Jun 26 16:19:14 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 27 Jun 2009 07:19:14 +0800
Subject: FV: Hi from Jo
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au><701423EF02784E27809819C914E46EE3@hp><000601c9eee8$3d69d860$b83d8920$@net.au><999820F49AB245158B6CAC01BE1E197D@dell91><20C0206E33B74F6FA9E42B0F2E50F9E3@hp>
	<A7E2159D926E418F85A8809B991556E9@dell91>
Message-ID: <7E6BA31ED08042FF965672F161163E62@hp>

Hi Jane
I would love to be in contact with claire and sallys family. sounds like they are in a similar situation as us, 
passing on our email address would be a good idea. then we could work out a time to talk. thanks.
our few days with darrell was fantastic all though he has left us with a shit load of work to do.
we are thinking that to find the right boarding school may not be that easy.
our group of friends with darrells help is looking the best option.
its a matter of staying focused, and that is where we need a litle bit of darrell or someone similar to keep pushing us
Cheers Al 
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Wednesday, June 24, 2009 4:55 PM
  Subject: Re: FV: Hi from Jo


  Hi Al

   

  I am sure that will not be hard to link you in with Sally and Claire.  How would you like to do this?  Can I pass on your email; phone or I could ask them if I can give you a contact number and maybe good time to call??

   

  What do you think?

  Regards Jane

   

  Jane Warner/Hudson

  gerlindejane1 at bigpond.com

  6 Koina Street,

  Goondiwindi Qld 4390

   

  07 46714737 home

  Work 07 46714809 - - 0407748839

   


------------------------------------------------------------------------------

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Tuesday, June 23, 2009 6:23 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi from Jo

   

  Hi Jane

  thanks for that offer, we would love to comunicate with somebody that had already crossed that bridge.

  Cheers Al.

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Monday, June 22, 2009 3:45 PM

    Subject: Re: FV: Hi from Jo

     

    HI Al

    I have been away for a week so just catching up on the wonderful FV.  I know of a family whose daughter went to boarding school in High school.  Maybe I could link you to them?

    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, June 17, 2009 11:09 AM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi from Jo

     

    Hi There Al,

    Wonderful to hear from you.  Wow, I am still absorbing the possibility of Elliot going to boarding school, how amazing would that be.  I hope you get some responses from people as it will be so interesting to learn how they went about it.   I haven't heard of anyone doing it but being a city gal and not having anything to do with boarding schools down here it doesn't put me in that area.

     

    I'll be thinking of you all next week talking about all this stuff and hope you'll have the time to let us know how it goes.  I am so with you on the scary bit, and  exciting at the same time wondering where all these discussions and actions will take us and thrilled to be sharing with likeminded people.  

     

    I feel like I'm getting to know Sharon and Elliot through you so please say hi to them for me.  Are they coming down in August too?

    Jo

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Wednesday, 17 June 2009 5:26 AM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi from Jo

     

    Hi Jo 

    It is great to read what you are up to. I know what you meant about the library teacher it, and how much impact those few kind words have.

    Sharon and myself are puting together a similar evening with friends next week. Darrell will be joining us aswell for a few days to disscus the 

    possibility of Elliot going to an Ag school next year. Scarry stuff as the closest Ag school is 4000 km away. has anybody had any experience

    with there kids in an Ag school boarding situation. would love to here positive or negative. 

    I still dont know what date  I will be in Perth but would love to catch up .about mid August.

    Cheers Al Mason----- Original Message ----- 

      From: Family Voices 

      To: familyvoices at inpress.pledgonline.com 

      Sent: Tuesday, June 16, 2009 8:08 PM

      Subject: Re: FV: Hi from Jo

       

      Thats so awesome Jo! You made my night!!!

       

      Jaquie xx

       

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Tuesday, 16 June 2009 6:18 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi from Jo

       

      Thanks Maureen, he had a great day today with everyone thrilled to see him again.  Frank said it will be better next week in regard to him helping the teacher now that they have a few ideas so here's hoping.  I walked Dan home from the school and as we passed the teachers car park his old library teacher stopped and yelled out "Dan came to my library to see me today", she had genuine warmth and excitement in her voice - wonderful for me to hear.  Give me a few days to get over this hive of activity and I'll sit down doing some reflections on how tomorrow night goes.  

       

      It's so lovely to hear from you, hoping all is going well over your way,

      Jo

       

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Tuesday, 16 June 2009 1:51 PM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi from Jo

       

      Look forward to hearing how it all goes Jo, both with Dan's work placement and your circles meeting.

      Maureen

        ----- Original Message ----- 

        From: Family Voices 

        To: familyvoices at inpress.pledgonline.com 

        Sent: Tuesday, June 16, 2009 11:14 AM

        Subject: Re: FV: Hi from Jo

         

        Thanks everyone, it was lovely to hear from you all.  

         

        Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and to share - who knows who'll be drifting into town for the odd catch up and although this isn't quite the same still a great way to stay in touch.  I can so understand your nervousness and I am in awe of people who can go onto stage with all that confidence.  Please pass on my congratulations to Rachel on all her hard work and wishing you both a fabulous trip.   When do you get back?

         

        Anita, your description of not holding on too tightly and knowing when to let go is the one I struggle with constantly, if you have any tips to share would love to hear them.  When did you start Warren's circle of support and did you develop it yourself or use a model from somewhere,  have you been challenged with any radical suggestions and if so, how did you manage it.  Hope you don't mind all these questions but another one is, do you think the circle would be self sustaining if you were not involved - this is my aim for Dan's support and would love to hear your thoughts.

         

        I have just dropped Dan off to his Work Placement, everyone was very warm and welcoming.  He so knew something was up this morning, wearing spiffy clothes (not the usual school uniform) and I had been telling him he was going to his old school to support the teacher, he was talking to me nonstop and pulling everything off the table and bench tops (I wasn't enjoying that bit) but think it was to do with some nervousness on his part.

         

        One more sleep and we have our evening with friends, will give you some feedback on how the night goes.

        Jo

         

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Sunday, 14 June 2009 10:31 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Hi from Jo

         

        Hi Jo "All Good" and well done in the Nunn household you all deserve lots of praise.
        What a shame distances are so great and we are not in to flitting around the country and visiting each other. Clearly we all have so much Knowledge and warm feelings to share. In the High household we are getting ready for the Ireland journey. We are so pleased how hard Rachel has worked on her presentation and how confident she is feeling. I think it is mum who will be sitting on the side lines who will be the most nervous .
        My warmest wishes to you all Miriam


------------------------------------------------------------------------


        To: familyvoices at inpress.pledgonline.com
        Date: Sun, 14 Jun 2009 09:10:46 +0800
        From: familyvoices at inpress.pledgonline.com
        Subject: FV: Hi from Jo

        Hi There Everyone,

         

        Just an update from the Nunn household and keeping in touch.

         

        You may remember me hinting at some Education stuff I wasn't looking forward to tackling - well last week was the week that we had the meeting.  In WA we are allowed to apply for a 13th year for our children to attend school, we had decided we wanted Daniel to attend an additional year if possible.  Problem was our principal we had a good relationship with and who I know would have supported us moved on in 3rd term 2008.  The acting principal was the deputy who immediately set about trying to get Daniel out of the school at the end of last year - we won that one and he returned to the school this year.  Anyhow, anyhow, anyhow, the new principal came on board this term and I was convinced that the deputy (who was the acting principal) would have had a major influence in whether or not Dan could do a 13th year and I was feeling that we wouldn't get a hearing as to why we felt the need for Dan to continue on for the additional year.  However, off we trot, put our case forward - he says "do you want the short answer or the long answer", I sometimes just don't know when to keep my mouth shut so add a few more points - really just repeating what I'd already said, when I finally stop he says "yes", well, I'm gobsmacked and say in the most intelligent way "what", he then say's "there is a condition" ( so, I am thinking this was just too easy) when he adds "his behaviour will have to improve, I agree and say "place him on a Management Behaviour Program" (laughing) and he says " it's not good when Frank (Dan's Aide) is asking him to go into class and Daniel is bolting out of the school gates and that has to change".  I swear if you weren't listening carefully you would have thought he was serious.  He then tells me he's put all the paper work through and it's been approved by the education department.  We are still feeling a bit shocked and stunned but absolutely thrilled with the outcome.

         

        Another nice story, we have been trying to get Daniel into a Work Placement with no luck to date.  One of the things we have been thinking about is him supporting a teacher in a school and thought his old school would be the place to start as we still know quite a few people working there.  The Coordinator phoned me last week to let me know he's been given a position with his old year 7 teacher to work as an aide beginning next week.  If will be for 5 weeks with a possibility of it continuing.  This type of job fits so well with Daniel and his personality so am very much hoping it will be successful.

         

        On Wednesday night we will be having Dan's first Microboard Meeting so feeling a tad nervous, there's something about inviting people into our lives that leaves us feeling a bit vulnerable - will they come, if they do will they want to be a part of supporting Dan to continue being included in our community, will they walk the talk!!  I want to change the pinwheel model in that it's me at the centre organising everything to something that looks much messier with lots of people organising stuff around Dan - does that make sense?  I will soon find out if it's realistic to achieve and if so will be so much better for Dan and me.

         

        I hope everyone is well and keeping the flu's at bay.  

        Jo

         


------------------------------------------------------------------------

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From familyvoices at inpress.pledgonline.com  Fri Jun 26 22:10:07 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 27 Jun 2009 15:10:07 +1000
Subject: FV: ***** SUSPECTED SPAM *****  Discrimination in Alberta
In-Reply-To: <F771E2BF-E4A8-4ECA-B0DD-AAF19B3A4C92@aapt.net.au>
References: <002e01c9f63b$0f7bba40$2e732ec0$@com>
	<F771E2BF-E4A8-4ECA-B0DD-AAF19B3A4C92@aapt.net.au>
Message-ID: <002601c9f6e5$89debf30$9d9c3d90$@com>

That's great, Jill. Hope all is going well with you.  I haven't had  a
chance to read the FV for the last couple of weeks. Hoping to catch up with
everything soon.

Take care

Anita S

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:15 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: ***** SUSPECTED SPAM ***** Discrimination in Alberta

 

Thanks for passing this on Anita.......sent an email - hope it acts as
another little snowdrop on the bough!

Jill

On 26/06/2009, at 6:19 PM, Family Voices wrote:





Hi everyone,

Please check out this link and if you can, perhaps send an email to support
overturning the decision to exclude Hannah from travelling on the school
bus.  The email address of the chair of Elk Island School Division is:
Bonnie Riddell email: bonnie.riddell at ei.educ.ab.ca

Thanks

Anita

 

http://aacl.org/

 

 

 

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From familyvoices at inpress.pledgonline.com  Fri Jun 26 22:24:59 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 27 Jun 2009 15:24:59 +1000
Subject: FV: Jo seeking help
In-Reply-To: <COL117-W404498924B98CC1F9FAA10D2350@phx.gbl>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au><F1053067-5319-4680-AF09-C4765E401843@aapt.net.au><COL117-W305B50733734D2DEBD34FAD2350@phx.gbl><482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>	<383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>	<428D9BDA3296401AAFB38FC0494D743F@D8XYGK1S>
	<002401c9f633$e932df00$bb989d00$@net.au>
	<COL117-W404498924B98CC1F9FAA10D2350@phx.gbl>
Message-ID: <002b01c9f6e7$9dcf0c00$d96d2400$@com>

Wow - what wisdom from you all! There is so much to take on here and its
also helped me to get more thinking happening around jobs.  Dale has applied
for a couple of part time positions at HJ, KFC and McDonalds.  He has a
support person helping with that and with us, and KFC and McDonalds have
responded fairly well so far.  We'll know more in the coming week or so.
However, for after school, Dale has told us he really likes lawn mowing and
often helps his dad out with this.  The thoughts we have at the moment is to
set him up in his own business after he finishes high school and look for a
business partner, or some other way of supporting him.  I don't know if the
business idea is something Dan would consider? We haven't tried anything yet
and I don't think its going to be smooth sailing at all especially after
hearing your stories, but its just another aspect to the whole job thing.
There's a couple of people here in Brisbane (and there's Sally Richards son
Jackson in Canberra) who have set up their own business, and of course,
Sheena in Alberta.  

Dale has a basic resume and his website which we think helps to show the
many facets of who he is.  There are some issues with his website at the
moment but when that's resolved hopefully he'll continue his blogging (with
our significant help!) and that might help people's perceptions of him. Time
will tell - we'll keep you posted!

Good luck Jo and let us know how it all goes.

Anita S xx

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 7:18 PM
To: family voices
Subject: Re: FV: Jo seeking help

 

Hi Jo just take it all slowly and go with your gut feeling after all it is
Dan's emotional security which is the most important thing. If he feels good
about his world that is what matters, and remember "if in doubt DON'T" good
luck love Miriam
 

  _____  

To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 15:58:36 +0800
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

You are all amazing, resilient, strong women along with your children, these
conversations are giving me so much - thank you beautiful people.

Love Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 3:11 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

This is so wonderful Jill and to hear and learn how things are working for
you. I am always watching those who are a few steps ahead of us.

Even though Lauren's position at the theatre is usually terrific, there is
always the chance someone else is rostered on (Paid employee) and they just
don't get it. She has had a few occasions where she hasn't been accepted.
She usually tells us by starting the conversation with "I didn't cry,
but...."  My heart bleeds!!! . However, I have told her she has to sort it
out with the staff and the co-ordinator of volunteers. It's tough, but I
don't go and sort out her siblings problems at their work! That has made a
big impact and she tries to battle on. I usually assist with an email or
phone call, but these times are getting further apart, so she is either
handling situations better, or they aren't happening as much.

A wise old physio told me when Lauren was very small, that life is easy for
disabled children and really tough for disabled adults. The older Lauren
gets the more this has become true. but she is tough too. and resilient and
strong........and so am I

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 26, 2009 4:53 PM

Subject: Re: FV: Jo seeking help

 

 

Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.

Jill

 

 

 

 

Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: family voices <mailto:familyvoices at inpress.pledgonline.com> 

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 

Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 


  _____  


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence. 

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote: 

 

Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   

 

They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 

 

I would like to print off your emails to share with school if you are ok
with that.

 

Thanks again

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in
something like that.

We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.

I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.

 

I drove some video organizations mad with "Please let her work
here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



__________ Information from ESET NOD32 Antivirus, version of virus signature
database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com <http://www.eset.com/> 

 

 


  _____  


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From familyvoices at inpress.pledgonline.com  Fri Jun 26 22:52:00 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sat, 27 Jun 2009 15:52:00 +1000
Subject: FV: Jo seeking help
In-Reply-To: <002b01c9f6e7$9dcf0c00$d96d2400$@com>
Message-ID: <7tpfp5$bfbdhj@ipmail01.adl6.internode.on.net>

Great info and insights everyone.
 
Hope you don't mind me sharing some of my very enjoyable "listening in"
moments in recent times.
 
As you may remember we employed a young girl to help us out on Thursday
nights in our very busy hair salon.  Crystal is in year 11 and has a
developmental disability.   She fulfils a much needed role of ensuring all
the colour bowls are clean, the sink is not piled up, the foils are folded,
she 'passes up' for the seniors doing colours or perms if they need her to,
she runs errands etc.  It frees the juniors up and less errors are made,
things run smoother.  
 
Well there have been two instances of late I have really enjoyed.  Firstly,
Crystal has been told by my Mum that she definitely has a job until the end
of the year but after that they will just have to see how things are going.
We try to employ at least one apprentice every year to ensure we are 'giving
back' to the local community as well as meeting the needs/demands of the
salon.  So Mum explained to Crystal that because a new apprentice might be
employed at the end of the year they will just have to see how things pan
out.  Crystal was explaining this to her own Mum who very delightfully
recounted the discussion with us.  Crystal advised her mum."well I've got a
job until Christmas, but then they might get a new apprentice.   DUMB
APPRENTICE", was the muttering as she walked away from her Mum.  We love it
and will do our absolute best to ensure she creates such a niche for herself
in the salon that she at least secures herself that role for another year
when she will finish year 12, regardless of whether a 'Dumb Apprentice is
employed or not'.  
 
The other 'make me smile' moment was when I was in the salon yesterday at
the basins getting my hair washed.  We had all the juniors, Crystal, and two
work experience girls in the salon and one of the juniors was busy
explaining to Crystal that she is allowed to direct the work experience
girls with their work.  If Crystal needs them to take a load of washing over
to the laundry then she is able to ask them to do that.  I love that our
really young workers allow Crystal that empowerment ensuring she knows she
has seniority over others, that she is allowed to have responsibility.  
 
Cheers
 
Gina 
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From familyvoices at inpress.pledgonline.com  Sun Jun 28 07:58:49 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Sun, 28 Jun 2009 22:58:49 +0800
Subject: FV: Jo seeking help
In-Reply-To: <002b01c9f6e7$9dcf0c00$d96d2400$@com>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au><F1053067-5319-4680-AF09-C4765E401843@aapt.net.au><COL117-W305B50733734D2DEBD34FAD2350@phx.gbl><482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>	<383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>	<428D9BDA3296401AAFB38FC0494D743F@D8XYGK1S>	<002401c9f633$e932df00$bb989d00$@net.au>	<COL117-W404498924B98CC1F9FAA10D2350@phx.gbl>
	<002b01c9f6e7$9dcf0c00$d96d2400$@com>
Message-ID: <003f01c9f800$f2346be0$d69d43a0$@net.au>

My developing understanding around having a business is that we need to be
clear about our expectations. There are quite a few enterprises around the
place which aren't businesses. If an enterprise doesn't make money and has
no business plan to make money, it isn't a business...it is a community
service. That's still a valid activity.

 

The reason this is important is that we need to approach businesses for our
kids as we would any other business if they are to make money and work. It
is still very early days for us but we see the future sustainability of
eli's business being linked to the number of team members he has. Where a
business is one person plus some paid support, that is less sustainable.
Where it is a gang of people with complimentary skills then you have
something. Right now there are 8 people in eli's business. So far this has
worked. We lost what we thought was a key person recently but the team was
so robust it didn't even register in terms of how they function. There are
enough people that jobs can be easily covered if someone is sick or can't
make it in.

 

Enrolling other young people in our kids businesses is doable and I must say
it is great fun. 

 

I also recommend business coaching...

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Saturday, 27 June 2009 1:25 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Wow - what wisdom from you all! There is so much to take on here and its
also helped me to get more thinking happening around jobs.  Dale has applied
for a couple of part time positions at HJ, KFC and McDonalds.  He has a
support person helping with that and with us, and KFC and McDonalds have
responded fairly well so far.  We'll know more in the coming week or so.
However, for after school, Dale has told us he really likes lawn mowing and
often helps his dad out with this.  The thoughts we have at the moment is to
set him up in his own business after he finishes high school and look for a
business partner, or some other way of supporting him.  I don't know if the
business idea is something Dan would consider? We haven't tried anything yet
and I don't think its going to be smooth sailing at all especially after
hearing your stories, but its just another aspect to the whole job thing.
There's a couple of people here in Brisbane (and there's Sally Richards son
Jackson in Canberra) who have set up their own business, and of course,
Sheena in Alberta.  

Dale has a basic resume and his website which we think helps to show the
many facets of who he is.  There are some issues with his website at the
moment but when that's resolved hopefully he'll continue his blogging (with
our significant help!) and that might help people's perceptions of him. Time
will tell - we'll keep you posted!

Good luck Jo and let us know how it all goes.

Anita S xx

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 7:18 PM
To: family voices
Subject: Re: FV: Jo seeking help

 

Hi Jo just take it all slowly and go with your gut feeling after all it is
Dan's emotional security which is the most important thing. If he feels good
about his world that is what matters, and remember "if in doubt DON'T" good
luck love Miriam
 

  _____  

To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 15:58:36 +0800
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

You are all amazing, resilient, strong women along with your children, these
conversations are giving me so much - thank you beautiful people.

Love Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 3:11 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

This is so wonderful Jill and to hear and learn how things are working for
you. I am always watching those who are a few steps ahead of us.

Even though Lauren's position at the theatre is usually terrific, there is
always the chance someone else is rostered on (Paid employee) and they just
don't get it. She has had a few occasions where she hasn't been accepted.
She usually tells us by starting the conversation with "I didn't cry,
but...."  My heart bleeds!!! . However, I have told her she has to sort it
out with the staff and the co-ordinator of volunteers. It's tough, but I
don't go and sort out her siblings problems at their work! That has made a
big impact and she tries to battle on. I usually assist with an email or
phone call, but these times are getting further apart, so she is either
handling situations better, or they aren't happening as much.

A wise old physio told me when Lauren was very small, that life is easy for
disabled children and really tough for disabled adults. The older Lauren
gets the more this has become true. but she is tough too. and resilient and
strong........and so am I

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Friday, June 26, 2009 4:53 PM

Subject: Re: FV: Jo seeking help

 

 

Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.

Jill

 

 

 

 

Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: family voices <mailto:familyvoices at inpress.pledgonline.com> 

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 

Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 


  _____  


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence. 

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote: 

 

Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   

 

They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 

 

I would like to print off your emails to share with school if you are ok
with that.

 

Thanks again

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in
something like that.

We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.

I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.

 

I drove some video organizations mad with "Please let her work
here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



__________ Information from ESET NOD32 Antivirus, version of virus signature
database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com <http://www.eset.com/> 

 

 


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n/a/ci_450304/et_2/cg_801459/pi_1004813/ai_859641&_t=762955845&_r=tig_OCT07&
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From familyvoices at inpress.pledgonline.com  Sun Jun 28 16:52:20 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 29 Jun 2009 07:52:20 +0800
Subject: FV: Jo seeking help
In-Reply-To: <383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au>	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>	<COL117-W305B50733734D2DEBD34FAD2350@phx.gbl>	<482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S>
	<383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>
Message-ID: <007101c9f84b$7a176900$6e463b00$@net.au>

I just wanted to say that I really like the point Maureen makes about the
need for contribution in exchange for the pension...that is really cool in
terms of creating a sense of accountability/responsibility to contribute. We
should do more of that.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 2:53 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

 

Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.

Jill

 

 

 

 

Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: family voices <mailto:familyvoices at inpress.pledgonline.com> 

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 

Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 


  _____  


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence.

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote:

 

Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   

 

They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 

 

I would like to print off your emails to share with school if you are ok
with that.

 

Thanks again

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in
something like that.

We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.

I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.

 

I drove some video organizations mad with "Please let her work
here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



__________ Information from ESET NOD32 Antivirus, version of virus signature
database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com <http://www.eset.com/> 

 

 


  _____  


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From familyvoices at inpress.pledgonline.com  Sun Jun 28 21:18:39 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 29 Jun 2009 14:18:39 +1000
Subject: FV: Jo seeking help
In-Reply-To: <007101c9f84b$7a176900$6e463b00$@net.au>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au>	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>	<COL117-W305B50733734D2DEBD34FAD2350@phx.gbl>	<482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S><383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>
	<007101c9f84b$7a176900$6e463b00$@net.au>
Message-ID: <C96ABC94D8BE4718A30EE99C9BCF9E81@dell91>

Hi all

Still trying to catch up have now printed off conversations and moving
sheets around house to get time to read.

 

But did want to say I too really like the exchange for pension stuff.  There
is something about having the opportunity to give back and not shoved away
because you are getting paid.????

 

Also to share that Sarah has been offered a job part time, two afternoons a
week which will take her out of school.  She will be supported by Employment
agency.  Is such a weird feeling, bit like grade 1, beginning of high
school?  Happy but I suppose bit scared my god being a mother what a
fantastic journey.

 

Sarah is thrilled!!

 

All the best to everyone

 

Jane Warner/Hudson

 

07 46714737

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, June 29, 2009 9:52 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

I just wanted to say that I really like the point Maureen makes about the
need for contribution in exchange for the pension...that is really cool in
terms of creating a sense of accountability/responsibility to contribute. We
should do more of that.

 

Jaquie :-)

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 2:53 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

 

Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.

Jill

 

 

 

 

Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: family voices <mailto:familyvoices at inpress.pledgonline.com> 

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 

Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 


  _____  


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence.

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote:

 

Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   

 

They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 

 

I would like to print off your emails to share with school if you are ok
with that.

 

Thanks again

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in
something like that.

We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.

I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.

 

I drove some video organizations mad with "Please let her work
here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



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database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com <http://www.eset.com/> 

 

 


  _____  


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From familyvoices at inpress.pledgonline.com  Sun Jun 28 22:13:50 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 29 Jun 2009 15:13:50 +1000
Subject: FV: Jo seeking help
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au>	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>	<COL117-W305B50733734D2DEBD34FAD2350@phx.gbl>	<482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S><383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au><007101c9f84b$7a176900$6e463b00$@net.au>
	<C96ABC94D8BE4718A30EE99C9BCF9E81@dell91>
Message-ID: <D8795C99446F4184A0536B5B44690A9B@D8XYGK1S>

Hi Jane, this is fantastic news about Sarah and a job opportunity. What will she be doing?
Good on her.. I wish you all well. Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Monday, June 29, 2009 2:18 PM
  Subject: Re: FV: Jo seeking help


  Hi all

  Still trying to catch up have now printed off conversations and moving sheets around house to get time to read.

   

  But did want to say I too really like the exchange for pension stuff.  There is something about having the opportunity to give back and not shoved away because you are getting paid.????

   

  Also to share that Sarah has been offered a job part time, two afternoons a week which will take her out of school.  She will be supported by Employment agency.  Is such a weird feeling, bit like grade 1, beginning of high school?  Happy but I suppose bit scared my god being a mother what a fantastic journey.

   

  Sarah is thrilled!!

   

  All the best to everyone

   

  Jane Warner/Hudson

   

  07 46714737

   


------------------------------------------------------------------------------

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Monday, June 29, 2009 9:52 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Jo seeking help

   

  I just wanted to say that I really like the point Maureen makes about the need for contribution in exchange for the pension...that is really cool in terms of creating a sense of accountability/responsibility to contribute. We should do more of that.

   

  Jaquie J

   

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Friday, 26 June 2009 2:53 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Jo seeking help

   

   

  Yes, a sense of worth is the critical and most important outcome.  Ben's paid employment for 19 hours/week across five days is complemented with two half days of voluntary work.  He is a community bus assistant one afternoon where he assists elderly passengers on and off the bus  with their parcels and helps with reshelving in the Library another afternoon.  Both these unpaid jobs contribute to his self worth and bring him into contact with  community.  I don't think working full time in his paid work would work for Ben even if it was offered.  The bus job is the one where he feels that he is contributing most and the passengers give him chocolates for Christmas!  The job he enjoys most is the Library and I don't know why.   Although he enjoys his paid work to a point, it depends on who he is working with.  The times it has been difficult are when he has been working with people who have not been supportive or inclusive.  He does not verbalise this but  when it is happening  he gets into some unacceptable behaviour at work and develops some strong obsessive compulsive behaviours.  This has been the really hard stuff to work through as work decided that these behaviours are part of his disability and not a result of his environment.  There have been many times when I considered him leaving, but knowing the difficulty he would have in getting other activities to fill his day enjoyably, it would add to his feelings of low self esteem.  Another activity which adds to his sense of importance is going to his 87 year old grandmother's once a week for dinner and stay the night.  He says he goes there to take his grandfather's place and look after her.  It has been a great joy to see their relationship develop over the past couple of years as my mother , although loving him dearly,  has always thought of him as a little boy with no regard for his adulthood.  Now, she looks forward to his stay, spends all day cooking for him (4 courses) and says she has the best night's sleep when he is there. He also brings home a left over meal, which he pointedly says to me the next night "I have my own meal tonight"  Love it!  The balance is fine at the moment but daren't take my eye off it.

  Jill

   

   

   

   

    Your wise words Miriam are almost exactly what we have here with Lauren.

    Her voluntary position is as important as any paid position. We have emphasised her pension is given to her and for that she should contribute to the world. She can understand that. She is a happy volunteer, She is actually very proud of it and wouldn't hear of anyone underestimating it. When a paid job comes along it is all a bonus.

    As for her paid position at the market. She has usually spent the pay before she leaves the market! Talk about "put back!"

    But it is her money and hard earned.

    Maureen

     

      ----- Original Message -----

      From: Family Voices

      To: family voices

      Sent: Friday, June 26, 2009 2:28 PM

      Subject: Re: FV: Jo seeking help

       

      Jo all these messages to you make me feel really guilty about getting work for Rachel . We did start to go down that journey when she first left school and like many found it all so depressing. The jobs  we managed to get her into were tokenism and did not last or were simply things she did not enjoy doing."I am not cleaning out bird cages" and it was all greatly upseting for her.
      So we took another path. We first of all helped Rachel to understand that she did get a pension each week and therefore was assured of an income. However this was like being paid and she was expected(by us) to be willing to put something back into the community.
      We did not care what it was but she needed to go out of the house several days a week to do something, This could be a Gym session ,typing and helping with the children at the day care centre, typing for the Salvation army, offering to set up and clear up for a sporting or social club. dance lesson , walking a friends dogs. a TAFE course. It did not matter what it was. Some of these things she needed someone with her and some she did not
      What was important for us was that she gained a good feeling about giving back and not just taking her pension for granted and doing nothing.
      The activities she took on were ones which followed her interest and so she was fully committed to them . This enabled  her to be welcome in the setting and offered no stress to people requiring her to be paid.
      As time went by Rachel skills were recognised and from time to time she is paid for work she does and she is delighted. The great thing about this for us and for her is her life is full and we seem never to have to worry about what she will be doing next week.We are however the constant taxi driver and need to be ever vigilant to note the next door waiting to be opened.
      I do not know if she will ever get a full time paid job but she has learnt about the work ethic and thankfully appraoches each new opportunity with enthusiasm .
      I am sure this is letting employers off the hook but for Rachel her life is full of work, sometimes very demanding but also rewarding and with no one giving her the charity vote
      Miriam
       


--------------------------------------------------------------------------

      To: familyvoices at inpress.pledgonline.com
      Date: Fri, 26 Jun 2009 12:31:18 +0930
      From: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Jo seeking help

      OK about the forwarding my email Jo.  You are already doing the positive stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales reminded me of a situation we had with Ben. He was doing some work experience with a house cleaning team.  House cleaning is the least thing he would be interested in doing so it was doomed from the beginning!  (another thing to keep in mind......not to set up for failure by doing things that Dan has no interest in).  Well, the person in charge rang me to tell me that Ben was not doing at all well and that 'people like him' do best collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the conversation ended very quickly.  That person actually apologised about five years later after he heard how well Ben was doing in his job as an admin assistant.   When suggestions like this are put forward, I now realise that there is no point into putting effort and time into these people....they are wasting Ben's time.   Surround yourself and Dan with people who believe in what you want to achieve and do not have their own agendas.  Ben has had his job for 19 years and is taking his second lot of long service leave in August.  It hasn't been without its worrying times, but what I now realise is that most of the problems were caused by other people and not by Ben.  It is so easy to fall into "it must be the person who has the disability" as the problem and then as the parent, try to fix the problem  by trying to 'fix' our son or daughter.  It is also good cop out stuff for some people so that they don't have to put in more effort.  Hopefully I have learned to be a bit more circumspect.  These issues are similar to school issues when inclusion is not the real agenda.  It has all been worth every bit of worry, effort etc as Ben's life is so rich with all the contact he has in community and the knowledge that 'ordinary' people have learned from his community presence.

      Best Wishes

      Jill

      On 26/06/2009, at 10:37 AM, Family Voices wrote:

         

        Thanks so much Jill and Maureen for your support, I appreciated the stories Maureen of the difficulties and am taking note for future reference, I had to laugh at the possible "Logging in the Otways" job and can see how ridiculous it can get and how important it is to keep a sense of humour.  The agencies here will not support Dan because of his disabilities - they have all this criteria that he has to fit in to for him to be helped, so have known for many years that we will have to find him jobs ourselves - I so understand the comment about "it being too difficult for them", it's an internal battle I've had for many years, even about the schooling.  Am going to make a big effort to take on your advice Jill, to be positive and raise my expectations.   

         

        They are going to make up Dan's resume in his IT class, he will be doing it - they came up with this idea themselves.  I think I may have finally gotten the knack of planting seeds in a certain way where they are coming up with the ideas.  It's only taken me 12 years!!  I couldn't believe how the meeting went with the enthusiasm and ideas flowing - more than I could come up with on my own. 

         

        I would like to print off your emails to share with school if you are ok with that.

         

        Thanks again

        Jo

         

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Friday, 26 June 2009 8:36 AM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Jo seeking help

         

        Hi Jo

        We have had a fair bit of experience with what you are going through.

        The CV is a great start,

        Lauren's interest is film, theatre and TV and celebrities.

        So we started trying to find a position where she could be involved in something like that.

        We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.

        There are plenty of learning's here.

        One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.

         

        Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 

         

        This position was paid a normal wage.

        However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension.

        I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.

        The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.

         

        I could go on and on and on Jo.

        We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.

         

        She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.

        I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.

        After the chainsaw incident, we took Lauren away from the organization and went it alone completely.

         

        It was allot of hard work for me.

         

        Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.

         

        I drove some video organizations mad with "Please let her work here!"requests.

        Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!

         

        I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!

         

         

        She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.

        She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.

         

        I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.

         

        Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.

         

        No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.

         

        So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.

         

        Good luck Jo.

        It's a long and interesting road.

        Maureen

          ----- Original Message -----

          From: Family Voices

          To: familyvoices at inpress.pledgonline.com

          Sent: Friday, June 26, 2009 8:09 AM

          Subject: FV: Jo seeking help

           

          Hi There Everyone,

           

          I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT - lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work. 

           

          During the meeting I said that I felt it's important we use the right language and that we don't set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn't mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.

           

          Looking forward to hearing from you.

          Jo

           



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From familyvoices at inpress.pledgonline.com  Sun Jun 28 22:23:04 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 29 Jun 2009 14:53:04 +0930
Subject: FV: Jo seeking help
In-Reply-To: <C96ABC94D8BE4718A30EE99C9BCF9E81@dell91>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au>	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>	<COL117-W305B50733734D2DEBD34FAD2350@phx.gbl>	<482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S><383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>
	<007101c9f84b$7a176900$6e463b00$@net.au>
	<C96ABC94D8BE4718A30EE99C9BCF9E81@dell91>
Message-ID: <F6095812-9A61-4FCE-90BA-30BAA62E81AE@aapt.net.au>

Great news Jane.  it is scary but somehow we all manage to survive and  
move on ready (?) for the next scary moment!  Keep us posted how it  
goes.

Jill
On 29/06/2009, at 1:48 PM, Family Voices wrote:

> Hi all
> Still trying to catch up have now printed off conversations and  
> moving sheets around house to get time to read.
>
> But did want to say I too really like the exchange for pension  
> stuff.  There is something about having the opportunity to give back  
> and not shoved away because you are getting paid.????
>
> Also to share that Sarah has been offered a job part time, two  
> afternoons a week which will take her out of school.  She will be  
> supported by Employment agency.  Is such a weird feeling, bit like  
> grade 1, beginning of high school?  Happy but I suppose bit scared  
> my god being a mother what a fantastic journey.
>
> Sarah is thrilled!!
>
> All the best to everyone
>
> Jane Warner/Hudson
>
> 07 46714737
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Monday, June 29, 2009 9:52 AM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Jo seeking help
>
> I just wanted to say that I really like the point Maureen makes  
> about the need for contribution in exchange for the pension...that  
> is really cool in terms of creating a sense of accountability/ 
> responsibility to contribute. We should do more of that.
>
> Jaquie J
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Friday, 26 June 2009 2:53 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Jo seeking help
>
>
> Yes, a sense of worth is the critical and most important outcome.   
> Ben's paid employment for 19 hours/week across five days is  
> complemented with two half days of voluntary work.  He is a  
> community bus assistant one afternoon where he assists elderly  
> passengers on and off the bus  with their parcels and helps with  
> reshelving in the Library another afternoon.  Both these unpaid jobs  
> contribute to his self worth and bring him into contact with   
> community.  I don't think working full time in his paid work would  
> work for Ben even if it was offered.  The bus job is the one where  
> he feels that he is contributing most and the passengers give him  
> chocolates for Christmas!  The job he enjoys most is the Library and  
> I don't know why.   Although he enjoys his paid work to a point, it  
> depends on who he is working with.  The times it has been difficult  
> are when he has been working with people who have not been  
> supportive or inclusive.  He does not verbalise this but  when it is  
> happening  he gets into some unacceptable behaviour at work and  
> develops some strong obsessive compulsive behaviours.  This has been  
> the really hard stuff to work through as work decided that these  
> behaviours are part of his disability and not a result of his  
> environment.  There have been many times when I considered him  
> leaving, but knowing the difficulty he would have in getting other  
> activities to fill his day enjoyably, it would add to his feelings  
> of low self esteem.  Another activity which adds to his sense of  
> importance is going to his 87 year old grandmother's once a week for  
> dinner and stay the night.  He says he goes there to take his  
> grandfather's place and look after her.  It has been a great joy to  
> see their relationship develop over the past couple of years as my  
> mother , although loving him dearly,  has always thought of him as a  
> little boy with no regard for his adulthood.  Now, she looks forward  
> to his stay, spends all day cooking for him (4 courses) and says she  
> has the best night's sleep when he is there. He also brings home a  
> left over meal, which he pointedly says to me the next night "I have  
> my own meal tonight"  Love it!  The balance is fine at the moment  
> but daren't take my eye off it.
> Jill
>
>
>
>
> Your wise words Miriam are almost exactly what we have here with  
> Lauren.
> Her voluntary position is as important as any paid position. We have  
> emphasised her pension is given to her and for that she should  
> contribute to the world. She can understand that. She is a happy  
> volunteer, She is actually very proud of it and wouldn't hear of  
> anyone underestimating it. When a paid job comes along it is all a  
> bonus.
> As for her paid position at the market. She has usually spent the  
> pay before she leaves the market! Talk about "put back!"
> But it is her money and hard earned.
> Maureen
>
> ----- Original Message -----
> From: Family Voices
> To: family voices
> Sent: Friday, June 26, 2009 2:28 PM
> Subject: Re: FV: Jo seeking help
>
> Jo all these messages to you make me feel really guilty about  
> getting work for Rachel . We did start to go down that journey when  
> she first left school and like many found it all so depressing. The  
> jobs  we managed to get her into were tokenism and did not last or  
> were simply things she did not enjoy doing."I am not cleaning out  
> bird cages" and it was all greatly upseting for her.
> So we took another path. We first of all helped Rachel to understand  
> that she did get a pension each week and therefore was assured of an  
> income. However this was like being paid and she was expected(by us)  
> to be willing to put something back into the community.
> We did not care what it was but she needed to go out of the house  
> several days a week to do something, This could be a Gym  
> session ,typing and helping with the children at the day care  
> centre, typing for the Salvation army, offering to set up and clear  
> up for a sporting or social club. dance lesson , walking a friends  
> dogs. a TAFE course. It did not matter what it was. Some of these  
> things she needed someone with her and some she did not
> What was important for us was that she gained a good feeling about  
> giving back and not just taking her pension for granted and doing  
> nothing.
> The activities she took on were ones which followed her interest and  
> so she was fully committed to them . This enabled  her to be welcome  
> in the setting and offered no stress to people requiring her to be  
> paid.
> As time went by Rachel skills were recognised and from time to time  
> she is paid for work she does and she is delighted. The great thing  
> about this for us and for her is her life is full and we seem never  
> to have to worry about what she will be doing next week.We are  
> however the constant taxi driver and need to be ever vigilant to  
> note the next door waiting to be opened.
> I do not know if she will ever get a full time paid job but she has  
> learnt about the work ethic and thankfully appraoches each new  
> opportunity with enthusiasm .
> I am sure this is letting employers off the hook but for Rachel her  
> life is full of work, sometimes very demanding but also rewarding  
> and with no one giving her the charity vote
> Miriam
>
> To: familyvoices at inpress.pledgonline.com
> Date: Fri, 26 Jun 2009 12:31:18 +0930
> From: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Jo seeking help
>
> OK about the forwarding my email Jo.  You are already doing the  
> positive stuff  as the meeting wouldn't have gone the way it did!   
> Maureen's tales reminded me of a situation we had with Ben. He was  
> doing some work experience with a house cleaning team.  House  
> cleaning is the least thing he would be interested in doing so it  
> was doomed from the beginning!  (another thing to keep in  
> mind......not to set up for failure by doing things that Dan has no  
> interest in).  Well, the person in charge rang me to tell me that  
> Ben was not doing at all well and that 'people like him' do best  
> collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!   
> Needless to say the conversation ended very quickly.  That person  
> actually apologised about five years later after he heard how well  
> Ben was doing in his job as an admin assistant.   When suggestions  
> like this are put forward, I now realise that there is no point into  
> putting effort and time into these people....they are wasting Ben's  
> time.   Surround yourself and Dan with people who believe in what  
> you want to achieve and do not have their own agendas.  Ben has had  
> his job for 19 years and is taking his second lot of long service  
> leave in August.  It hasn't been without its worrying times, but  
> what I now realise is that most of the problems were caused by other  
> people and not by Ben.  It is so easy to fall into "it must be the  
> person who has the disability" as the problem and then as the  
> parent, try to fix the problem  by trying to 'fix' our son or  
> daughter.  It is also good cop out stuff for some people so that  
> they don't have to put in more effort.  Hopefully I have learned to  
> be a bit more circumspect.  These issues are similar to school  
> issues when inclusion is not the real agenda.  It has all been worth  
> every bit of worry, effort etc as Ben's life is so rich with all the  
> contact he has in community and the knowledge that 'ordinary' people  
> have learned from his community presence.
> Best Wishes
> Jill
> On 26/06/2009, at 10:37 AM, Family Voices wrote:
>
> Thanks so much Jill and Maureen for your support, I appreciated the  
> stories Maureen of the difficulties and am taking note for future  
> reference, I had to laugh at the possible ?Logging in the Otways?  
> job and can see how ridiculous it can get and how important it is to  
> keep a sense of humour.  The agencies here will not support Dan  
> because of his disabilities ? they have all this criteria that he  
> has to fit in to for him to be helped, so have known for many years  
> that we will have to find him jobs ourselves ? I so understand the  
> comment about ?it being too difficult for them?, it?s an internal  
> battle I?ve had for many years, even about the schooling.  Am going  
> to make a big effort to take on your advice Jill, to be positive and  
> raise my expectations.
>
> They are going to make up Dan?s resume in his IT class, he will be  
> doing it ? they came up with this idea themselves.  I think I may  
> have finally gotten the knack of planting seeds in a certain way  
> where they are coming up with the ideas.  It?s only taken me 12  
> years!!  I couldn?t believe how the meeting went with the enthusiasm  
> and ideas flowing ? more than I could come up with on my own.
>
> I would like to print off your emails to share with school if you  
> are ok with that.
>
> Thanks again
> Jo
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Friday, 26 June 2009 8:36 AM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Jo seeking help
>
> Hi Jo
> We have had a fair bit of experience with what you are going through.
> The CV is a great start,
> Lauren's interest is film, theatre and TV and celebrities.
> So we started trying to find a position where she could be involved  
> in something like that.
> We went totally mainstream, and the only thing that was different  
> from any other young person going for a position is that she had a  
> support worker with her.
> There are plenty of learning's here.
> One theatre that she went to took all her information and she filled  
> out "The form"and they said the next step would be a phone  
> interview! Well, that did happen when I wasn't home and, quiet  
> honestly, Lauren sounds more like a 10 year old than an (at the  
> time) 18 year old when she is on the phone. After that they wrote to  
> her and said don't bother EVER applying to our theatre again! She  
> was devastated and so was I. We took a big step back. I have since  
> heard that allot of places do a first interview on the phone and  
> once you get past that you get to the next round.
>
> Next theatre Lauren got the position fair and square and the  
> management were most acceptable and actually surprised me at how  
> accepting they were. However, under the manager came the regular  
> staff, who had no idea how to work with someone with a disability.  
> The support worker went with her and she was selling programs at the  
> theatre entrance. The podium she was to stand on was dangerous for  
> her and she had to balance her books! The support worker was on the  
> ball and Lauren was working very hard. However 4 hours on her feet  
> standing on a small platform is physically too much for her and they  
> offered her a job ion the cloakroom. That was fine,only when I went  
> to pick her up she was sitting in what looked like a cupboard! She  
> was so miserable as she had been there for 4 hours and spoken to no  
> one and was terribly concerned she had got things (Peoples  
> belongings) mixed up!I couldn't get her to go back she was so  
> stressed! The support worker couldn't fit in the cupboard so  
> wandered around the theatre.
>
> This position was paid a normal wage.
> However, even though meagre, I had to report it to Centrelink every  
> fortnight, even if she didn't get a shift and it never incringed on  
> her pension.
> I was so worried about phoning them on the right day at the right  
> time, it became a big bug bare! I did it and hated it. Lauren  
> couldn't possibly manage that part of it so it all became my  
> responsibility and I am trying to step back out of her life not take  
> on more responsibility. So just be aware of the Centrelink  
> responsibility.
> The learning's in this experience is, that we should have supported  
> the organization better and perhaps they could have supported Lauren  
> better. I always felt the management wanted to but didn't know how,  
> and I wasn't confident enough to approach them - I kept thinking  
> that Lauren would be too difficult for them so they wouldn't take  
> her on. I think I was wrong.
>
> I could go on and on and on Jo.
> We have had 7 years of interviews and let downs and it has been  
> terribly difficult to keep Lauren's morale high.
>
> She was offered a traineeship through a government job seeking  
> organization. The young woman who was assisting Lauren to find a job  
> would get Lauren all excited every Monday when the jobs were given  
> to the organization. Lauren would always phone me from the place  
> with much excitement about working at McDonalds clearing tables or  
> Hungry Jacks serving customers (All things she couldn't physically  
> do) and then one day in much excitement she was told she was  
> eligible for a traineeship and it was for "Logging in the  
> Otways"...I very calmly spoke to the young woman who was helping  
> Lauren and explained Lauren can't use a chainsaw. The young lady had  
> no idea what "Logging in the Otways"meant. - in case you don't know  
> what the Otways is, it is a mountain range near the great ocean road  
> in Victoria.
> I am only telling you this Jo, because if we didn't keep a sense of  
> humour we would have gone in sane during our efforts to assist Lauren.
> After the chainsaw incident, we took Lauren away from the  
> organization and went it alone completely.
>
> It was allot of hard work for me.
>
> Lauren had work experience at a video store when she was at school.  
> Infact she had three lots of work experience at three different  
> stores and she was very good at re winding videos and selecting the  
> movies for in house and dusting shelves.
>
> I drove some video organizations mad with "Please let her work  
> here!"requests.
> Video Easy put an interesting flyer in our letterbox that looked  
> like a wanted poster. At the time they were looking for customers.  
> We have a printing business, so I took it to work and made it look  
> like a wanted poster for Lauren looking for a job at Video Easy and  
> I sent it back to their head office and every video easy store near  
> our home. I thought it was very clever, but no one from Video Easy  
> answered the request!
>
> I spoke for hours to the HR people at Blockbuster. I got them all  
> sorts of information about employing people with a disability.  
> Lauren would be very happy working one shift a week. That's probably  
> all she could have done. I was told they don't promise any of their  
> staff a shift so it would be discrimination against all the other  
> employees!!
>
>
> She now has a voluntary position as an usher in a cinema. She loves  
> it. She is very valued by the organization she works for and she has  
> flexibility around her health and her ability.
> She also has a paid job at a farmers market where she works in the  
> citrus stall handing out samples of fruit and making orange juice.  
> She is learning to serve customers. That is only once a month.
>
> I could go on and on....some good people, some terrible, some really  
> "get it"others haven't got a clue.
>
> Now Lauren is 8 years out of school, what I notice around the group  
> of friends who left school at the same time is..The ones who's  
> parents have really assisted with job hunting, have got somewhere,  
> and those who's parents can't find the time to assist them and go to  
> interviews with them, well, those young ones are still on the "job  
> training wheel" or work in disability training programs or the  
> workshops type places.
>
> No one comes knocking at your door saying "I have a job for Dan" you  
> have to be out there and searching for it.
>
> So my suggestion is..........Be creative, make sure he has good  
> support, make sure the organization he works with are well supported  
> too, and that their staff are patient and caring. Try not to let all  
> the knockbacks get you down and I hope you don't have too many of  
> them.
>
> Good luck Jo.
> It's a long and interesting road.
> Maureen
> ----- Original Message -----
> From: Family Voices
> To: familyvoices at inpress.pledgonline.com
> Sent: Friday, June 26, 2009 8:09 AM
> Subject: FV: Jo seeking help
>
> Hi There Everyone,
>
> I had a meeting with the school today about Daniels Work Placement  
> (used to be called Work Experience when I was at school).  Anyhow  
> they want to do up a Resume with Daniel in IT ? lots of photos of  
> Dan doing things that could potentially fit in with a work  
> situation.   When the Resume is complete Daniel and his Aide will  
> take it around to businesses we have identified as being suitable  
> places for him to work.
>
> During the meeting I said that I felt it?s important we use the  
> right language and that we don?t set Daniel up to be a charitable  
> project.  I said that some people may initially have Daniel work for  
> them for charitable reasons but if we use positive language along  
> with them getting to know Dan this attitude has potential to shift  
> as I have seen occur in other areas of his life.  The people I met  
> with today were really keen to understand the correct language to  
> use when introducing Dan to potential employers and asked me to  
> provide them with information.  I am still struggling with the  
> correct language myself and would love it if you could suggest ways  
> of how we first introduce Dan and so on.  If anyone has done a  
> Resume and wouldn?t mind sharing we would find it very useful.  And  
> anything else you can think of to help Dan expand his work experience.
>
> Looking forward to hearing from you.
> Jo
>
>
>
> __________ Information from ESET NOD32 Antivirus, version of virus  
> signature database 4188 (20090625) __________
>
> The message was checked by ESET NOD32 Antivirus.
>
> http://www.eset.com
>
>
> Let us help with car news, reviews and more Looking for a new car  
> this winter?
>
> Checked by AVG - www.avg.com
> Version: 8.5.375 / Virus Database: 270.12.93/2206 - Release Date:  
> 06/28/09 17:54:00
>

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From familyvoices at inpress.pledgonline.com  Sun Jun 28 23:43:42 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Mon, 29 Jun 2009 16:13:42 +0930
Subject: FV: Jo seeking help
In-Reply-To: <C96ABC94D8BE4718A30EE99C9BCF9E81@dell91>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au>
	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>
	<COL117-W305B50733734D2DEBD34FAD2350@phx.gbl>
	<482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S><383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au>
	<007101c9f84b$7a176900$6e463b00$@net.au> 
	<C96ABC94D8BE4718A30EE99C9BCF9E81@dell91>
Message-ID: <COL117-W356CB59BC72470E421E6D0D2300@phx.gbl>


That is great news Jane , I wish you lots more such journeys Love Miriam
 


To: familyvoices at inpress.pledgonline.com
Date: Mon, 29 Jun 2009 14:18:39 +1000
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help









Hi all
Still trying to catch up have now printed off conversations and moving sheets around house to get time to read.
 
But did want to say I too really like the exchange for pension stuff.  There is something about having the opportunity to give back and not shoved away because you are getting paid.????
 
Also to share that Sarah has been offered a job part time, two afternoons a week which will take her out of school.  She will be supported by Employment agency.  Is such a weird feeling, bit like grade 1, beginning of high school?  Happy but I suppose bit scared my god being a mother what a fantastic journey.
 
Sarah is thrilled!!
 
All the best to everyone
 

Jane Warner/Hudson
 
07 46714737
 




From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
Sent: Monday, June 29, 2009 9:52 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
I just wanted to say that I really like the point Maureen makes about the need for contribution in exchange for the pension...that is really cool in terms of creating a sense of accountability/responsibility to contribute. We should do more of that.
 
Jaquie J
 


From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
Sent: Friday, 26 June 2009 2:53 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
 


Yes, a sense of worth is the critical and most important outcome.  Ben's paid employment for 19 hours/week across five days is complemented with two half days of voluntary work.  He is a community bus assistant one afternoon where he assists elderly passengers on and off the bus  with their parcels and helps with reshelving in the Library another afternoon.  Both these unpaid jobs contribute to his self worth and bring him into contact with  community.  I don't think working full time in his paid work would work for Ben even if it was offered.  The bus job is the one where he feels that he is contributing most and the passengers give him chocolates for Christmas!  The job he enjoys most is the Library and I don't know why.   Although he enjoys his paid work to a point, it depends on who he is working with.  The times it has been difficult are when he has been working with people who have not been supportive or inclusive.  He does not verbalise this but  when it is happening  he gets into some unacceptable behaviour at work and develops some strong obsessive compulsive behaviours.  This has been the really hard stuff to work through as work decided that these behaviours are part of his disability and not a result of his environment.  There have been many times when I considered him leaving, but knowing the difficulty he would have in getting other activities to fill his day enjoyably, it would add to his feelings of low self esteem.  Another activity which adds to his sense of importance is going to his 87 year old grandmother's once a week for dinner and stay the night.  He says he goes there to take his grandfather's place and look after her.  It has been a great joy to see their relationship develop over the past couple of years as my mother , although loving him dearly,  has always thought of him as a little boy with no regard for his adulthood.  Now, she looks forward to his stay, spends all day cooking for him (4 courses) and says she has the best night's sleep when he is there. He also brings home a left over meal, which he pointedly says to me the next night "I have my own meal tonight"  Love it!  The balance is fine at the moment but daren't take my eye off it.

Jill

 

 

 

 



Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have emphasised her pension is given to her and for that she should contribute to the world. She can understand that. She is a happy volunteer, She is actually very proud of it and wouldn't hear of anyone underestimating it. When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 


----- Original Message -----

From: Family Voices

To: family voices

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 
Jo all these messages to you make me feel really guilty about getting work for Rachel . We did start to go down that journey when she first left school and like many found it all so depressing. The jobs  we managed to get her into were tokenism and did not last or were simply things she did not enjoy doing."I am not cleaning out bird cages" and it was all greatly upseting for her.
So we took another path. We first of all helped Rachel to understand that she did get a pension each week and therefore was assured of an income. However this was like being paid and she was expected(by us) to be willing to put something back into the community.
We did not care what it was but she needed to go out of the house several days a week to do something, This could be a Gym session ,typing and helping with the children at the day care centre, typing for the Salvation army, offering to set up and clear up for a sporting or social club. dance lesson , walking a friends dogs. a TAFE course. It did not matter what it was. Some of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she was fully committed to them . This enabled  her to be welcome in the setting and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is paid for work she does and she is delighted. The great thing about this for us and for her is her life is full and we seem never to have to worry about what she will be doing next week.We are however the constant taxi driver and need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt about the work ethic and thankfully appraoches each new opportunity with enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is full of work, sometimes very demanding but also rewarding and with no one giving her the charity vote
Miriam
 



To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales reminded me of a situation we had with Ben. He was doing some work experience with a house cleaning team.  House cleaning is the least thing he would be interested in doing so it was doomed from the beginning!  (another thing to keep in mind......not to set up for failure by doing things that Dan has no interest in).  Well, the person in charge rang me to tell me that Ben was not doing at all well and that 'people like him' do best collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the conversation ended very quickly.  That person actually apologised about five years later after he heard how well Ben was doing in his job as an admin assistant.   When suggestions like this are put forward, I now realise that there is no point into putting effort and time into these people....they are wasting Ben's time.   Surround yourself and Dan with people who believe in what you want to achieve and do not have their own agendas.  Ben has had his job for 19 years and is taking his second lot of long service leave in August.  It hasn't been without its worrying times, but what I now realise is that most of the problems were caused by other people and not by Ben.  It is so easy to fall into "it must be the person who has the disability" as the problem and then as the parent, try to fix the problem  by trying to 'fix' our son or daughter.  It is also good cop out stuff for some people so that they don't have to put in more effort.  Hopefully I have learned to be a bit more circumspect.  These issues are similar to school issues when inclusion is not the real agenda.  It has all been worth every bit of worry, effort etc as Ben's life is so rich with all the contact he has in community and the knowledge that 'ordinary' people have learned from his community presence.

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote:


 



Thanks so much Jill and Maureen for your support, I appreciated the stories Maureen of the difficulties and am taking note for future reference, I had to laugh at the possible ?Logging in the Otways? job and can see how ridiculous it can get and how important it is to keep a sense of humour.  The agencies here will not support Dan because of his disabilities ? they have all this criteria that he has to fit in to for him to be helped, so have known for many years that we will have to find him jobs ourselves ? I so understand the comment about ?it being too difficult for them?, it?s an internal battle I?ve had for many years, even about the schooling.  Am going to make a big effort to take on your advice Jill, to be positive and raise my expectations.   

 

They are going to make up Dan?s resume in his IT class, he will be doing it ? they came up with this idea themselves.  I think I may have finally gotten the knack of planting seeds in a certain way where they are coming up with the ideas.  It?s only taken me 12 years!!  I couldn?t believe how the meeting went with the enthusiasm and ideas flowing ? more than I could come up with on my own. 

 

I would like to print off your emails to share with school if you are ok with that.

 

Thanks again

Jo

 



From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 


Hi Jo


We have had a fair bit of experience with what you are going through.


The CV is a great start,


Lauren's interest is film, theatre and TV and celebrities.


So we started trying to find a position where she could be involved in something like that.


We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.


There are plenty of learning's here.


One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.


 


Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 


 


This position was paid a normal wage.


However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension.


I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.


The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.


 


I could go on and on and on Jo.


We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.


 


She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.


I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.


After the chainsaw incident, we took Lauren away from the organization and went it alone completely.


 


It was allot of hard work for me.


 


Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.


 


I drove some video organizations mad with "Please let her work here!"requests.


Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!


 


I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!


 


 


She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.


She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.


 


I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.


 


Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.


 


No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.


 


So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.


 


Good luck Jo.


It's a long and interesting road.


Maureen



----- Original Message -----


From: Family Voices


To: familyvoices at inpress.pledgonline.com


Sent: Friday, June 26, 2009 8:09 AM


Subject: FV: Jo seeking help


 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT ? lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work. 

 

During the meeting I said that I felt it?s important we use the right language and that we don?t set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn?t mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



__________ Information from ESET NOD32 Antivirus, version of virus signature database 4188 (20090625) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com
 
 



Let us help with car news, reviews and more Looking for a new car this winter?
 
Checked by AVG - www.avg.com
Version: 8.5.375 / Virus Database: 270.12.93/2206 - Release Date: 06/28/09 17:54:00


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From familyvoices at inpress.pledgonline.com  Mon Jun 29 16:29:31 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 08:59:31 +0930
Subject: FV: Hannah Gunderson - school response
References: <fc.0119edcf0124ab723b9aca00ffe98447.124ab78@ei.educ.ab.ca>
Message-ID: <3B42612F-0F09-48B9-94B7-8D4FB4BC43E2@aapt.net.au>

Hi All
Forwarding the school's response.  Hopefully there will be some more  
discussion with a positive outcome for Hannah and her family.
Jill

Begin forwarded message:

> From: "Bonnie Riddell TRUS" <Bonnie.Riddell at ei.educ.ab.ca>
> Date: 30 June 2009 6:02:10 AM
> To: "JILL WISHART" <jillwishart at aapt.net.au>
> Subject: Re: Hannah Gunderson
>
> Please find attached a letter in response to your email.  Thank you.
> Bonnie Riddell, Chair - EIPS.
>
>
> JILL WISHART <jillwishart at aapt.net.au> writes:
>> Dear Ms Riddell
>> It is with great sadness that I hear your school has made a decision
>> to exclude Hannah from travelling with her peers on the school bus.
>> The 'out of school hours'  curriculum is where relationships with
>> peers can be fostered and developed; a critical part of every child's
>> development and provides another area of 'life learning'.  For
>> children who have a disability this is even more critical as often
>> there are less opportunities for friendships to be encouraged and
>> supported.  The sense of belonging and well being that ensues, lays
>> the foundation for optimum learning for the child when in the
>> classroom - the same for all children
>> Segregation does not provide a positive model for the children we are
>> educating to understand and appreciate the differences which exist   
>> among
>> peoples.
>>
>> I implore you to reconsider your decision and to welcome Hannah once
>> again on the school bus to be a child amongst others.
>>
>> Yours sincerely
>> Jill Wishart
>>
>
>

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From familyvoices at inpress.pledgonline.com  Tue Jun 30 00:28:59 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 17:28:59 +1000
Subject: FV: Hannah Gunderson - school response
In-Reply-To: <3B42612F-0F09-48B9-94B7-8D4FB4BC43E2@aapt.net.au>
References: <fc.0119edcf0124ab723b9aca00ffe98447.124ab78@ei.educ.ab.ca>
	<3B42612F-0F09-48B9-94B7-8D4FB4BC43E2@aapt.net.au>
Message-ID: <6817B49A4EAD407694D330430FAF4D80@dell91>

HI Jill

Sorry I am computer brain dead now but really want to open response.  Can
anyone help a old bushie in south west qld open attachment.

 

I have also purchased today a apple laptop for sarah and Iphone 3gs for the
mother.  When I learn how to operate all these things I will really be
intouch.

 

Cheers Jane

 

Jane Warner/Hudson

 

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, June 30, 2009 9:30 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hannah Gunderson - school response

 

Hi All

Forwarding the school's response.  Hopefully there will be some more
discussion with a positive outcome for Hannah and her family.

Jill

 

Begin forwarded message:





From: "Bonnie Riddell TRUS" <Bonnie.Riddell at ei.educ.ab.ca>

Date: 30 June 2009 6:02:10 AM

To: "JILL WISHART" <jillwishart at aapt.net.au>

Subject: Re: Hannah Gunderson

 

Please find attached a letter in response to your email.  Thank you. 
Bonnie Riddell, Chair - EIPS.


JILL WISHART <jillwishart at aapt.net.au> writes:



Dear Ms Riddell

It is with great sadness that I hear your school has made a decision  

to exclude Hannah from travelling with her peers on the school bus.

The 'out of school hours'  curriculum is where relationships with  

peers can be fostered and developed; a critical part of every child's  

development and provides another area of 'life learning'.  For  

children who have a disability this is even more critical as often  

there are less opportunities for friendships to be encouraged and  

supported.  The sense of belonging and well being that ensues, lays  

the foundation for optimum learning for the child when in the  

classroom - the same for all children

Segregation does not provide a positive model for the children we are  

educating to understand and appreciate the differences which exist  among  

peoples.

 

I implore you to reconsider your decision and to welcome Hannah once  

again on the school bus to be a child amongst others.

 

Yours sincerely

Jill Wishart

 

 

Checked by AVG - www.avg.com
Version: 8.5.375 / Virus Database: 270.12.94/2207 - Release Date: 06/28/09
17:54:00


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From familyvoices at inpress.pledgonline.com  Tue Jun 30 00:42:54 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 17:42:54 +1000
Subject: FV: Hannah Gunderson - school response
In-Reply-To: <6817B49A4EAD407694D330430FAF4D80@dell91>
Message-ID: <7v2k17$c9g7a5@ipmail05.adl2.internode.on.net>

Jane
 
You will need Adobe Acrobat Reader to open the pdf file.
 
You can download here if you don't have it already.
http://www-adobe-reader.com/
 
Then it should be a simple double click on the pdf file.  Otherwise
highlight the email in your inbox/folder without opening it then choose
File>Save Attachments then you will be able to open it up from the location
you choose to save it to.
 
Does that help?
 
We are loving the iPhone for Mac and slowly learning all the bits and pieces
about it.
 
Gina
 
 
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 30 June 2009 5:29 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hannah Gunderson - school response
 
HI Jill
Sorry I am computer brain dead now but really want to open response.  Can
anyone help a old bushie in south west qld open attachment.
 
I have also purchased today a apple laptop for sarah and Iphone 3gs for the
mother.  When I learn how to operate all these things I will really be
intouch.
 
Cheers Jane
 
Jane Warner/Hudson
 
 
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, June 30, 2009 9:30 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hannah Gunderson - school response
 
Hi All
Forwarding the school's response.  Hopefully there will be some more
discussion with a positive outcome for Hannah and her family.
Jill
 
Begin forwarded message:
 
From: "Bonnie Riddell TRUS" <Bonnie.Riddell at ei.educ.ab.ca>
Date: 30 June 2009 6:02:10 AM
To: "JILL WISHART" <jillwishart at aapt.net.au>
Subject: Re: Hannah Gunderson
 
Please find attached a letter in response to your email.  Thank you. 
Bonnie Riddell, Chair - EIPS.


JILL WISHART <jillwishart at aapt.net.au> writes:
Dear Ms Riddell
It is with great sadness that I hear your school has made a decision  
to exclude Hannah from travelling with her peers on the school bus.
The 'out of school hours'  curriculum is where relationships with  
peers can be fostered and developed; a critical part of every child's  
development and provides another area of 'life learning'.  For  
children who have a disability this is even more critical as often  
there are less opportunities for friendships to be encouraged and  
supported.  The sense of belonging and well being that ensues, lays  
the foundation for optimum learning for the child when in the  
classroom - the same for all children
Segregation does not provide a positive model for the children we are  
educating to understand and appreciate the differences which exist  among  
peoples.
 
I implore you to reconsider your decision and to welcome Hannah once  
again on the school bus to be a child amongst others.
 
Yours sincerely
Jill Wishart
 
 

  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1787 of my spam emails to date.
The Professional version does not have this message.

Checked by AVG - www.avg.com
Version: 8.5.375 / Virus Database: 270.12.94/2207 - Release Date: 06/28/09
17:54:00

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From familyvoices at inpress.pledgonline.com  Tue Jun 30 02:10:28 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 18:40:28 +0930
Subject: FV: Hannah Gunderson - school response
In-Reply-To: <7v2k17$c9g7a5@ipmail05.adl2.internode.on.net>
References: <7v2k17$c9g7a5@ipmail05.adl2.internode.on.net>
Message-ID: <0475FDC6-BF16-471B-9088-9769108601E4@aapt.net.au>

Hope Gina has solved the problem for you Jane (thanks Gina).  I have  
recently bought an Apple laptop too.  It's a little different to  
operate than a PC but slowly getting there, and really like it.
Best wishes
Jill
On 30/06/2009, at 5:12 PM, Family Voices wrote:

> Jane
>
> You will need Adobe Acrobat Reader to open the pdf file.
>
> You can download here if you don?t have it already?
> http://www-adobe-reader.com/
>
> Then it should be a simple double click on the pdf file.  Otherwise  
> highlight the email in your inbox/folder without opening it then  
> choose File>Save Attachments then you will be able to open it up  
> from the location you choose to save it to.
>
> Does that help?
>
> We are loving the iPhone for Mac and slowly learning all the bits  
> and pieces about it.
>
> Gina
>
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Tuesday, 30 June 2009 5:29 PM
> To: familyvoices at inpress.pledgonline.com
> Subject: Re: FV: Hannah Gunderson - school response
>
> HI Jill
> Sorry I am computer brain dead now but really want to open  
> response.  Can anyone help a old bushie in south west qld open  
> attachment.
>
> I have also purchased today a apple laptop for sarah and Iphone 3gs  
> for the mother.  When I learn how to operate all these things I will  
> really be intouch.
>
> Cheers Jane
>
> Jane Warner/Hudson
>
>
> From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com 
> ] On Behalf Of Family Voices
> Sent: Tuesday, June 30, 2009 9:30 AM
> To: familyvoices at inpress.pledgonline.com
> Subject: FV: Hannah Gunderson - school response
>
> Hi All
> Forwarding the school's response.  Hopefully there will be some more  
> discussion with a positive outcome for Hannah and her family.
> Jill
>
> Begin forwarded message:
>
>
> From: "Bonnie Riddell TRUS" <Bonnie.Riddell at ei.educ.ab.ca>
> Date: 30 June 2009 6:02:10 AM
> To: "JILL WISHART" <jillwishart at aapt.net.au>
> Subject: Re: Hannah Gunderson
>
> Please find attached a letter in response to your email.  Thank you.
> Bonnie Riddell, Chair - EIPS.
>
>
> JILL WISHART <jillwishart at aapt.net.au> writes:
>
> Dear Ms Riddell
>> It is with great sadness that I hear your school has made a decision
>> to exclude Hannah from travelling with her peers on the school bus.
>> The 'out of school hours'  curriculum is where relationships with
>> peers can be fostered and developed; a critical part of every child's
>> development and provides another area of 'life learning'.  For
>> children who have a disability this is even more critical as often
>> there are less opportunities for friendships to be encouraged and
>> supported.  The sense of belonging and well being that ensues, lays
>> the foundation for optimum learning for the child when in the
>> classroom - the same for all children
>> Segregation does not provide a positive model for the children we are
>> educating to understand and appreciate the differences which exist   
>> among
>> peoples.
>>
>> I implore you to reconsider your decision and to welcome Hannah once
>> again on the school bus to be a child amongst others.
>>
>> Yours sincerely
>> Jill Wishart
>>
>
>
>
> I am using the Free version of SPAMfighter.
> We are a community of 6 million users fighting spam.
> SPAMfighter has removed 1787 of my spam emails to date.
> The Professional version does not have this message.
> Checked by AVG - www.avg.com
> Version: 8.5.375 / Virus Database: 270.12.94/2207 - Release Date:  
> 06/28/09 17:54:00
>
>

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From familyvoices at inpress.pledgonline.com  Tue Jun 30 02:29:16 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 19:29:16 +1000
Subject: FV: Tech stuff
In-Reply-To: <0475FDC6-BF16-471B-9088-9769108601E4@aapt.net.au>
References: <7v2k17$c9g7a5@ipmail05.adl2.internode.on.net>
	<0475FDC6-BF16-471B-9088-9769108601E4@aapt.net.au>
Message-ID: <C565A86F50D340D28F266E29B3062B1F@dell91>

Thanks for that.  I have just recently cleaned up desktop and seem to have
over cleaned just been onto Dell getting sound back.

 

I am really quite excited about the apple and iphone stuff will no doubt be
intouch Gina down the track.

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: Tuesday, June 30, 2009 7:10 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hannah Gunderson - school response

 

Hope Gina has solved the problem for you Jane (thanks Gina).  I have
recently bought an Apple laptop too.  It's a little different to operate
than a PC but slowly getting there, and really like it.  

Best wishes

Jill

On 30/06/2009, at 5:12 PM, Family Voices wrote:





Jane

 

You will need Adobe Acrobat Reader to open the pdf file.

 

You can download here if you don't have it already.

http://www-adobe-reader.com/

 

Then it should be a simple double click on the pdf file.  Otherwise
highlight the email in your inbox/folder without opening it then choose
File>Save Attachments then you will be able to open it up from the location
you choose to save it to.

 

Does that help?

 

We are loving the iPhone for Mac and slowly learning all the bits and pieces
about it.

 

Gina

 

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 30 June 2009 5:29 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hannah Gunderson - school response

 

HI Jill

Sorry I am computer brain dead now but really want to open response.  Can
anyone help a old bushie in south west qld open attachment.

 

I have also purchased today a apple laptop for sarah and Iphone 3gs for the
mother.  When I learn how to operate all these things I will really be
intouch.

 

Cheers Jane

 

Jane Warner/Hudson

 

 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, June 30, 2009 9:30 AM
To: familyvoices at inpress.pledgonline.com
Subject: FV: Hannah Gunderson - school response

 

Hi All

Forwarding the school's response.  Hopefully there will be some more
discussion with a positive outcome for Hannah and her family.

Jill

 

Begin forwarded message:

 

From: "Bonnie Riddell TRUS" <Bonnie.Riddell at ei.educ.ab.ca>

Date: 30 June 2009 6:02:10 AM

To: "JILL WISHART" <jillwishart at aapt.net.au>

Subject: Re: Hannah Gunderson

 

Please find attached a letter in response to your email.  Thank you. 
Bonnie Riddell, Chair - EIPS.


JILL WISHART <jillwishart at aapt.net.au> writes:

Dear Ms Riddell

It is with great sadness that I hear your school has made a decision  

to exclude Hannah from travelling with her peers on the school bus.

The 'out of school hours'  curriculum is where relationships with  

peers can be fostered and developed; a critical part of every child's  

development and provides another area of 'life learning'.  For  

children who have a disability this is even more critical as often  

there are less opportunities for friendships to be encouraged and  

supported.  The sense of belonging and well being that ensues, lays  

the foundation for optimum learning for the child when in the  

classroom - the same for all children

Segregation does not provide a positive model for the children we are  

educating to understand and appreciate the differences which exist  among  

peoples.

 

I implore you to reconsider your decision and to welcome Hannah once  

again on the school bus to be a child amongst others.

 

Yours sincerely

Jill Wishart

 

 

 

  _____  

I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>
.
We are a community of 6 million users fighting spam.
SPAMfighter has removed 1787 of my spam emails to date.
The Professional version does not have this message.

Checked by AVG - www.avg.com
Version: 8.5.375 / Virus Database: 270.12.94/2207 - Release Date: 06/28/09
17:54:00

 

 

Checked by AVG - www.avg.com
Version: 8.5.375 / Virus Database: 270.13.0/2209 - Release Date: 06/29/09
14:43:00


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From familyvoices at inpress.pledgonline.com  Tue Jun 30 02:31:49 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 19:31:49 +1000
Subject: FV: boarding
In-Reply-To: <7E6BA31ED08042FF965672F161163E62@hp>
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au><701423EF02784E27809819C914E46EE3@hp><000601c9eee8$3d69d860$b83d8920$@net.au><999820F49AB245158B6CAC01BE1E197D@dell91><20C0206E33B74F6FA9E42B0F2E50F9E3@hp><A7E2159D926E418F85A8809B991556E9@dell91>
	<7E6BA31ED08042FF965672F161163E62@hp>
Message-ID: <52EF90488FF948E3B0A91EEB05B540B5@dell91>

Hi Al

Sorry haven't got back earlier just read your email.  I will get  intouch
with Sally fill her in a bit and give her your email address which is???????
sorry al.

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: Saturday, June 27, 2009 9:19 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jane

I would love to be in contact with claire and sallys family. sounds like
they are in a similar situation as us, 

passing on our email address would be a good idea. then we could work out a
time to talk. thanks.

our few days with darrell was fantastic all though he has left us with a
shit load of work to do.

we are thinking that to find the right boarding school may not be that easy.

our group of friends with darrells help is looking the best option.

its a matter of staying focused, and that is where we need a litle bit of
darrell or someone similar to keep pushing us

Cheers Al 

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Wednesday, June 24, 2009 4:55 PM

Subject: Re: FV: Hi from Jo

 

Hi Al

 

I am sure that will not be hard to link you in with Sally and Claire.  How
would you like to do this?  Can I pass on your email; phone or I could ask
them if I can give you a contact number and maybe good time to call??

 

What do you think?

Regards Jane

 

Jane Warner/Hudson

gerlindejane1 at bigpond.com

6 Koina Street,

Goondiwindi Qld 4390

 

07 46714737 home

Work 07 46714809 - - 0407748839

 


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, June 23, 2009 6:23 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jane

thanks for that offer, we would love to comunicate with somebody that had
already crossed that bridge.

Cheers Al.

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Monday, June 22, 2009 3:45 PM

Subject: Re: FV: Hi from Jo

 

HI Al

I have been away for a week so just catching up on the wonderful FV.  I know
of a family whose daughter went to boarding school in High school.  Maybe I
could link you to them?

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, June 17, 2009 11:09 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi There Al,

Wonderful to hear from you.  Wow, I am still absorbing the possibility of
Elliot going to boarding school, how amazing would that be.  I hope you get
some responses from people as it will be so interesting to learn how they
went about it.   I haven't heard of anyone doing it but being a city gal and
not having anything to do with boarding schools down here it doesn't put me
in that area.

 

I'll be thinking of you all next week talking about all this stuff and hope
you'll have the time to let us know how it goes.  I am so with you on the
scary bit, and  exciting at the same time wondering where all these
discussions and actions will take us and thrilled to be sharing with
likeminded people.  

 

I feel like I'm getting to know Sharon and Elliot through you so please say
hi to them for me.  Are they coming down in August too?

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Wednesday, 17 June 2009 5:26 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo 

It is great to read what you are up to. I know what you meant about the
library teacher it, and how much impact those few kind words have.

Sharon and myself are puting together a similar evening with friends next
week. Darrell will be joining us aswell for a few days to disscus the 

possibility of Elliot going to an Ag school next year. Scarry stuff as the
closest Ag school is 4000 km away. has anybody had any experience

with there kids in an Ag school boarding situation. would love to here
positive or negative. 

I still dont know what date  I will be in Perth but would love to catch up
.about mid August.

Cheers Al Mason----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 8:08 PM

Subject: Re: FV: Hi from Jo

 

Thats so awesome Jo! You made my night!!!

 

Jaquie xx

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 6:18 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Thanks Maureen, he had a great day today with everyone thrilled to see him
again.  Frank said it will be better next week in regard to him helping the
teacher now that they have a few ideas so here's hoping.  I walked Dan home
from the school and as we passed the teachers car park his old library
teacher stopped and yelled out "Dan came to my library to see me today", she
had genuine warmth and excitement in her voice - wonderful for me to hear.
Give me a few days to get over this hive of activity and I'll sit down doing
some reflections on how tomorrow night goes.  

 

It's so lovely to hear from you, hoping all is going well over your way,

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 16 June 2009 1:51 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Look forward to hearing how it all goes Jo, both with Dan's work placement
and your circles meeting.

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 16, 2009 11:14 AM

Subject: Re: FV: Hi from Jo

 

Thanks everyone, it was lovely to hear from you all.  

 

Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and
to share - who knows who'll be drifting into town for the odd catch up and
although this isn't quite the same still a great way to stay in touch.  I
can so understand your nervousness and I am in awe of people who can go onto
stage with all that confidence.  Please pass on my congratulations to Rachel
on all her hard work and wishing you both a fabulous trip.   When do you get
back?

 

Anita, your description of not holding on too tightly and knowing when to
let go is the one I struggle with constantly, if you have any tips to share
would love to hear them.  When did you start Warren's circle of support and
did you develop it yourself or use a model from somewhere,  have you been
challenged with any radical suggestions and if so, how did you manage it.
Hope you don't mind all these questions but another one is, do you think the
circle would be self sustaining if you were not involved - this is my aim
for Dan's support and would love to hear your thoughts.

 

I have just dropped Dan off to his Work Placement, everyone was very warm
and welcoming.  He so knew something was up this morning, wearing spiffy
clothes (not the usual school uniform) and I had been telling him he was
going to his old school to support the teacher, he was talking to me nonstop
and pulling everything off the table and bench tops (I wasn't enjoying that
bit) but think it was to do with some nervousness on his part.

 

One more sleep and we have our evening with friends, will give you some
feedback on how the night goes.

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Sunday, 14 June 2009 10:31 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Hi from Jo

 

Hi Jo "All Good" and well done in the Nunn household you all deserve lots of
praise.
What a shame distances are so great and we are not in to flitting around the
country and visiting each other. Clearly we all have so much Knowledge and
warm feelings to share. In the High household we are getting ready for the
Ireland journey. We are so pleased how hard Rachel has worked on her
presentation and how confident she is feeling. I think it is mum who will be
sitting on the side lines who will be the most nervous .
My warmest wishes to you all Miriam


  _____  



To: familyvoices at inpress.pledgonline.com
Date: Sun, 14 Jun 2009 09:10:46 +0800
From: familyvoices at inpress.pledgonline.com
Subject: FV: Hi from Jo

Hi There Everyone,

 

Just an update from the Nunn household and keeping in touch.

 

You may remember me hinting at some Education stuff I wasn't looking forward
to tackling - well last week was the week that we had the meeting.  In WA we
are allowed to apply for a 13th year for our children to attend school, we
had decided we wanted Daniel to attend an additional year if possible.
Problem was our principal we had a good relationship with and who I know
would have supported us moved on in 3rd term 2008.  The acting principal was
the deputy who immediately set about trying to get Daniel out of the school
at the end of last year - we won that one and he returned to the school this
year.  Anyhow, anyhow, anyhow, the new principal came on board this term and
I was convinced that the deputy (who was the acting principal) would have
had a major influence in whether or not Dan could do a 13th year and I was
feeling that we wouldn't get a hearing as to why we felt the need for Dan to
continue on for the additional year.  However, off we trot, put our case
forward - he says "do you want the short answer or the long answer", I
sometimes just don't know when to keep my mouth shut so add a few more
points - really just repeating what I'd already said, when I finally stop he
says "yes", well, I'm gobsmacked and say in the most intelligent way "what",
he then say's "there is a condition" ( so, I am thinking this was just too
easy) when he adds "his behaviour will have to improve, I agree and say
"place him on a Management Behaviour Program" (laughing) and he says " it's
not good when Frank (Dan's Aide) is asking him to go into class and Daniel
is bolting out of the school gates and that has to change".  I swear if you
weren't listening carefully you would have thought he was serious.  He then
tells me he's put all the paper work through and it's been approved by the
education department.  We are still feeling a bit shocked and stunned but
absolutely thrilled with the outcome.

 

Another nice story, we have been trying to get Daniel into a Work Placement
with no luck to date.  One of the things we have been thinking about is him
supporting a teacher in a school and thought his old school would be the
place to start as we still know quite a few people working there.  The
Coordinator phoned me last week to let me know he's been given a position
with his old year 7 teacher to work as an aide beginning next week.  If will
be for 5 weeks with a possibility of it continuing.  This type of job fits
so well with Daniel and his personality so am very much hoping it will be
successful.

 

On Wednesday night we will be having Dan's first Microboard Meeting so
feeling a tad nervous, there's something about inviting people into our
lives that leaves us feeling a bit vulnerable - will they come, if they do
will they want to be a part of supporting Dan to continue being included in
our community, will they walk the talk!!  I want to change the pinwheel
model in that it's me at the centre organising everything to something that
looks much messier with lots of people organising stuff around Dan - does
that make sense?  I will soon find out if it's realistic to achieve and if
so will be so much better for Dan and me.

 

I hope everyone is well and keeping the flu's at bay.  

Jo

 


  _____  


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From familyvoices at inpress.pledgonline.com  Tue Jun 30 03:02:24 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 20:02:24 +1000
Subject: FV: Jo seeking help
In-Reply-To: <D8795C99446F4184A0536B5B44690A9B@D8XYGK1S>
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	<D8795C99446F4184A0536B5B44690A9B@D8XYGK1S>
Message-ID: <15B457A9CD90475BB2BA987438E1566C@dell91>

Hello Ladies,

 

Sarah's job looks like this:  When she turned 16 we went thru the process of
getting a DSP which seemed to trigger a chain of events.    Then a job
assessment by centre link  psychologist Hmmmmmmmmm(sorry any psychologist
out there).  Then Sarah was deemed eligible for supported employment.  So we
have been having meetings regularly and learning along the way with no
expectations.

 

On Thursday she was offered two afternoons a week from 12.30 to 4.30 Tues
and Wed. to work at a Community Based org as Girl Friday.  She will be
employed by the Manager of the organization.  The Organization is the only
service in town, which has several services under its roof.  One is the
Supported Employment Agency, where the support worker will come from to
support Sarah at work.

 

The org has a Respite service funded by DSQ, Youth and Aged support worker
with trainee youth worker who Sarah knows from school 1 year older than
Sarah, Drug Arm (who I never see anyone there), Rural Family support Co ord,
partime psychologist young women who I like, Social Worker/community
development worker another young women with young family vibrant person and
numerous other staff admin, support workers etc.  It is a new building which
has built its reputation up in the community over the last 5 years under new
management and committee.

 

The manager is a IT guru and when I told him I was thinking of getting Sarah
a apple computer his eyes lit up, I then told him about Ipod touch and
communication program which he was very keen to see and work with. YEAH That
one just fell out of the sky.  AMAZING.  He explained that part of Sarah's
job is IT and that she would be working with him directly so who knows.  I
have had a meeting with the school who were supportive and have rung org and
arranged exchange of communication methods that they are using.  Have to say
I am a bit scared to say too much out loud incase all crumbles down but
really I cant see any reason to not give this a go.

One thing I have been able to do since coming home from Canada is step back
and let people do.  Maybe because I have been able to get the words of
wisdom from FV and feel safe to share thoughts.

 

Anyway I know this is a journey and no doubt will have its pot holes but I
am truly so thrilled for Sarah that people are giving her a go. I am hoping
that given the opportunity Sarah will shine.

 

Is quite ironic really when I spoke with school they were thrilled but were
concerned because they had organized for Sarah to go to Primary school on  a
Monday afternoon to do work experience in admin.  We will see!!

 

Take care 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: Monday, June 29, 2009 3:14 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jane, this is fantastic news about Sarah and a job opportunity. What will
she be doing?

Good on her.. I wish you all well. Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Monday, June 29, 2009 2:18 PM

Subject: Re: FV: Jo seeking help

 

Hi all

Still trying to catch up have now printed off conversations and moving
sheets around house to get time to read.

 

But did want to say I too really like the exchange for pension stuff.  There
is something about having the opportunity to give back and not shoved away
because you are getting paid.????

 

Also to share that Sarah has been offered a job part time, two afternoons a
week which will take her out of school.  She will be supported by Employment
agency.  Is such a weird feeling, bit like grade 1, beginning of high
school?  Happy but I suppose bit scared my god being a mother what a
fantastic journey.

 

Sarah is thrilled!!

 

All the best to everyone

 

Jane Warner/Hudson

 

07 46714737

 


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, June 29, 2009 9:52 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

I just wanted to say that I really like the point Maureen makes about the
need for contribution in exchange for the pension...that is really cool in
terms of creating a sense of accountability/responsibility to contribute. We
should do more of that.

 

Jaquie :-)

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 2:53 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

 

Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.

Jill

 

 

 

 

Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: family voices <mailto:familyvoices at inpress.pledgonline.com> 

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 

Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 


  _____  


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence.

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote:

 

Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   

 

They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 

 

I would like to print off your emails to share with school if you are ok
with that.

 

Thanks again

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in
something like that.

We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.

I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.

 

I drove some video organizations mad with "Please let her work
here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



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From familyvoices at inpress.pledgonline.com  Tue Jun 30 03:41:39 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 20:41:39 +1000
Subject: FV: Jo seeking help
In-Reply-To: <15B457A9CD90475BB2BA987438E1566C@dell91>
Message-ID: <7v2k17$c9j1mf@ipmail05.adl2.internode.on.net>

Jane
It sounds good.  


Honestly I am finding technology is very much the way to many people's
hearts.  I can see some of the senior teachers at Mac's school looking
longingly at his 'gear', I know they love getting their hands on the iPhone
to try and learn it at the moment and they certainly seem like they are keen
to learn more.
 
The kids more often than not start sentences with the words "Mac is so lucky
because."  cracks me up.
 
If Sarah is interested in it there is a really cool free program for Mac
computers called FluidTunes.  Provided her laptop has a built in camera she
can move backwards and forwards through her music by waving her arms to make
the program work.  It is basically a basic version of gesture recognition -
it is pretty mad.
 
Keeping fingers crossed the part time job just works nicely no dramas.
 
Gina
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 30 June 2009 8:02 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
Hello Ladies,
 
Sarah's job looks like this:  When she turned 16 we went thru the process of
getting a DSP which seemed to trigger a chain of events.    Then a job
assessment by centre link  psychologist Hmmmmmmmmm(sorry any psychologist
out there).  Then Sarah was deemed eligible for supported employment.  So we
have been having meetings regularly and learning along the way with no
expectations.
 
On Thursday she was offered two afternoons a week from 12.30 to 4.30 Tues
and Wed. to work at a Community Based org as Girl Friday.  She will be
employed by the Manager of the organization.  The Organization is the only
service in town, which has several services under its roof.  One is the
Supported Employment Agency, where the support worker will come from to
support Sarah at work.
 
The org has a Respite service funded by DSQ, Youth and Aged support worker
with trainee youth worker who Sarah knows from school 1 year older than
Sarah, Drug Arm (who I never see anyone there), Rural Family support Co ord,
partime psychologist young women who I like, Social Worker/community
development worker another young women with young family vibrant person and
numerous other staff admin, support workers etc.  It is a new building which
has built its reputation up in the community over the last 5 years under new
management and committee.
 
The manager is a IT guru and when I told him I was thinking of getting Sarah
a apple computer his eyes lit up, I then told him about Ipod touch and
communication program which he was very keen to see and work with. YEAH That
one just fell out of the sky.  AMAZING.  He explained that part of Sarah's
job is IT and that she would be working with him directly so who knows.  I
have had a meeting with the school who were supportive and have rung org and
arranged exchange of communication methods that they are using.  Have to say
I am a bit scared to say too much out loud incase all crumbles down but
really I cant see any reason to not give this a go.
One thing I have been able to do since coming home from Canada is step back
and let people do.  Maybe because I have been able to get the words of
wisdom from FV and feel safe to share thoughts.
 
Anyway I know this is a journey and no doubt will have its pot holes but I
am truly so thrilled for Sarah that people are giving her a go. I am hoping
that given the opportunity Sarah will shine.
 
Is quite ironic really when I spoke with school they were thrilled but were
concerned because they had organized for Sarah to go to Primary school on  a
Monday afternoon to do work experience in admin.  We will see!!
 
Take care 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: Monday, June 29, 2009 3:14 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
Hi Jane, this is fantastic news about Sarah and a job opportunity. What will
she be doing?
Good on her.. I wish you all well. Maureen
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Monday, June 29, 2009 2:18 PM
Subject: Re: FV: Jo seeking help
 
Hi all
Still trying to catch up have now printed off conversations and moving
sheets around house to get time to read.
 
But did want to say I too really like the exchange for pension stuff.  There
is something about having the opportunity to give back and not shoved away
because you are getting paid.????
 
Also to share that Sarah has been offered a job part time, two afternoons a
week which will take her out of school.  She will be supported by Employment
agency.  Is such a weird feeling, bit like grade 1, beginning of high
school?  Happy but I suppose bit scared my god being a mother what a
fantastic journey.
 
Sarah is thrilled!!
 
All the best to everyone
 
Jane Warner/Hudson
 
07 46714737
 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, June 29, 2009 9:52 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
I just wanted to say that I really like the point Maureen makes about the
need for contribution in exchange for the pension...that is really cool in
terms of creating a sense of accountability/responsibility to contribute. We
should do more of that.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 2:53 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
 
Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.
Jill
 
 
 
 
Your wise words Miriam are almost exactly what we have here with Lauren.
Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.
As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"
But it is her money and hard earned.
Maureen
 
----- Original Message -----
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 
To: family voices <mailto:familyvoices at inpress.pledgonline.com> 
Sent: Friday, June 26, 2009 2:28 PM
Subject: Re: FV: Jo seeking help
 
Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 

  _____  

To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence.
Best Wishes
Jill
On 26/06/2009, at 10:37 AM, Family Voices wrote:
 
Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   
 
They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 
 
I would like to print off your emails to share with school if you are ok
with that.
 
Thanks again
Jo
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
Hi Jo
We have had a fair bit of experience with what you are going through.
The CV is a great start,
Lauren's interest is film, theatre and TV and celebrities.
So we started trying to find a position where she could be involved in
something like that.
We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.
There are plenty of learning's here.
One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.
 
Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 
 
This position was paid a normal wage.
However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.
I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.
The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.
 
I could go on and on and on Jo.
We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.
 
She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.
I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.
After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.
 
It was allot of hard work for me.
 
Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.
 
I drove some video organizations mad with "Please let her work
here!"requests.
Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!
 
I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!
 
 
She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.
She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.
 
I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.
 
Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.
 
No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.
 
So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.
 
Good luck Jo.
It's a long and interesting road.
Maureen
----- Original Message -----
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 
To: familyvoices at inpress.pledgonline.com
Sent: Friday, June 26, 2009 8:09 AM
Subject: FV: Jo seeking help
 
Hi There Everyone,
 
I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 
 
During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.
 
Looking forward to hearing from you.
Jo
 


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From familyvoices at inpress.pledgonline.com  Tue Jun 30 03:52:40 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 20:52:40 +1000
Subject: FV: Jo seeking help
In-Reply-To: <15B457A9CD90475BB2BA987438E1566C@dell91>
References: <694CD15415E34F358615050302C752E8@D8XYGK1S><006b01c9f5e1$9928e290$cb7aa7b0$@com><CAB5BECB999F4EBEBD57B31202588081@D8XYGK1S><000601c9f5fa$8b7883d0$a2698b70$@net.au>	<F1053067-5319-4680-AF09-C4765E401843@aapt.net.au>	<COL117-W305B50733734D2DEBD34FAD2350@phx.gbl>	<482C12EA7FCA4253B56BA37134FF1B95@D8XYGK1S><383B3F72-D2F3-4183-9CFA-2290AACCFC46@aapt.net.au><007101c9f84b$7a176900$6e463b00$@net.au><C96ABC94D8BE4718A30EE99C9BCF9E81@dell91>	<D8795C99446F4184A0536B5B44690A9B@D8XYGK1S>
	<15B457A9CD90475BB2BA987438E1566C@dell91>
Message-ID: <000801c9f970$e37b1ec0$aa715c40$@com>

Hi Jane - how COOL! Go Sarah!

She's really going to fly, Jane.  Keep us posted.

Anita x

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 30 June 2009 8:02 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hello Ladies,

 

Sarah's job looks like this:  When she turned 16 we went thru the process of
getting a DSP which seemed to trigger a chain of events.    Then a job
assessment by centre link  psychologist Hmmmmmmmmm(sorry any psychologist
out there).  Then Sarah was deemed eligible for supported employment.  So we
have been having meetings regularly and learning along the way with no
expectations.

 

On Thursday she was offered two afternoons a week from 12.30 to 4.30 Tues
and Wed. to work at a Community Based org as Girl Friday.  She will be
employed by the Manager of the organization.  The Organization is the only
service in town, which has several services under its roof.  One is the
Supported Employment Agency, where the support worker will come from to
support Sarah at work.

 

The org has a Respite service funded by DSQ, Youth and Aged support worker
with trainee youth worker who Sarah knows from school 1 year older than
Sarah, Drug Arm (who I never see anyone there), Rural Family support Co ord,
partime psychologist young women who I like, Social Worker/community
development worker another young women with young family vibrant person and
numerous other staff admin, support workers etc.  It is a new building which
has built its reputation up in the community over the last 5 years under new
management and committee.

 

The manager is a IT guru and when I told him I was thinking of getting Sarah
a apple computer his eyes lit up, I then told him about Ipod touch and
communication program which he was very keen to see and work with. YEAH That
one just fell out of the sky.  AMAZING.  He explained that part of Sarah's
job is IT and that she would be working with him directly so who knows.  I
have had a meeting with the school who were supportive and have rung org and
arranged exchange of communication methods that they are using.  Have to say
I am a bit scared to say too much out loud incase all crumbles down but
really I cant see any reason to not give this a go.

One thing I have been able to do since coming home from Canada is step back
and let people do.  Maybe because I have been able to get the words of
wisdom from FV and feel safe to share thoughts.

 

Anyway I know this is a journey and no doubt will have its pot holes but I
am truly so thrilled for Sarah that people are giving her a go. I am hoping
that given the opportunity Sarah will shine.

 

Is quite ironic really when I spoke with school they were thrilled but were
concerned because they had organized for Sarah to go to Primary school on  a
Monday afternoon to do work experience in admin.  We will see!!

 

Take care 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: Monday, June 29, 2009 3:14 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jane, this is fantastic news about Sarah and a job opportunity. What will
she be doing?

Good on her.. I wish you all well. Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Monday, June 29, 2009 2:18 PM

Subject: Re: FV: Jo seeking help

 

Hi all

Still trying to catch up have now printed off conversations and moving
sheets around house to get time to read.

 

But did want to say I too really like the exchange for pension stuff.  There
is something about having the opportunity to give back and not shoved away
because you are getting paid.????

 

Also to share that Sarah has been offered a job part time, two afternoons a
week which will take her out of school.  She will be supported by Employment
agency.  Is such a weird feeling, bit like grade 1, beginning of high
school?  Happy but I suppose bit scared my god being a mother what a
fantastic journey.

 

Sarah is thrilled!!

 

All the best to everyone

 

Jane Warner/Hudson

 

07 46714737

 


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, June 29, 2009 9:52 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

I just wanted to say that I really like the point Maureen makes about the
need for contribution in exchange for the pension...that is really cool in
terms of creating a sense of accountability/responsibility to contribute. We
should do more of that.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 2:53 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

 

Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.

Jill

 

 

 

 

Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: family voices <mailto:familyvoices at inpress.pledgonline.com> 

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 

Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 


  _____  


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence.

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote:

 

Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   

 

They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 

 

I would like to print off your emails to share with school if you are ok
with that.

 

Thanks again

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in
something like that.

We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.

I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.

 

I drove some video organizations mad with "Please let her work
here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



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http://www.eset.com <http://www.eset.com/> 

 

 


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From familyvoices at inpress.pledgonline.com  Tue Jun 30 05:18:11 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 20:18:11 +0800
Subject: FV: boarding
References: <000601c9ec8c$f2aa1860$d7fe4920$@net.au><COL117-W1148E5ABBDA0B7C48016EDD2410@phx.gbl>	<000a01c9ee1f$cb356200$61a02600$@net.au>	<9A612ADFA2DC4558A6B08D7096582D76@D8XYGK1S><000001c9ee6b$c2c791a0$4856b4e0$@net.au>	<004b01c9ee7b$235a2c30$6a0e8490$@net.au><701423EF02784E27809819C914E46EE3@hp><000601c9eee8$3d69d860$b83d8920$@net.au><999820F49AB245158B6CAC01BE1E197D@dell91><20C0206E33B74F6FA9E42B0F2E50F9E3@hp><A7E2159D926E418F85A8809B991556E9@dell91><7E6BA31ED08042FF965672F161163E62@hp>
	<52EF90488FF948E3B0A91EEB05B540B5@dell91>
Message-ID: <FAE010043B354594A64035D4963575CB@hp>

Hi Jane
My email adress is sharal3 at bigpond.com.au 
Thanks 
Cheers Al
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Tuesday, June 30, 2009 5:31 PM
  Subject: FV: boarding


  Hi Al

  Sorry haven't got back earlier just read your email.  I will get  intouch with Sally fill her in a bit and give her your email address which is??????? sorry al.

  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: Saturday, June 27, 2009 9:19 AM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Hi from Jo

   

  Hi Jane

  I would love to be in contact with claire and sallys family. sounds like they are in a similar situation as us, 

  passing on our email address would be a good idea. then we could work out a time to talk. thanks.

  our few days with darrell was fantastic all though he has left us with a shit load of work to do.

  we are thinking that to find the right boarding school may not be that easy.

  our group of friends with darrells help is looking the best option.

  its a matter of staying focused, and that is where we need a litle bit of darrell or someone similar to keep pushing us

  Cheers Al 

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Wednesday, June 24, 2009 4:55 PM

    Subject: Re: FV: Hi from Jo

     

    Hi Al

     

    I am sure that will not be hard to link you in with Sally and Claire.  How would you like to do this?  Can I pass on your email; phone or I could ask them if I can give you a contact number and maybe good time to call??

     

    What do you think?

    Regards Jane

     

    Jane Warner/Hudson

    gerlindejane1 at bigpond.com

    6 Koina Street,

    Goondiwindi Qld 4390

     

    07 46714737 home

    Work 07 46714809 - - 0407748839

     


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Tuesday, June 23, 2009 6:23 AM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Hi from Jo

     

    Hi Jane

    thanks for that offer, we would love to comunicate with somebody that had already crossed that bridge.

    Cheers Al.

      ----- Original Message ----- 

      From: Family Voices 

      To: familyvoices at inpress.pledgonline.com 

      Sent: Monday, June 22, 2009 3:45 PM

      Subject: Re: FV: Hi from Jo

       

      HI Al

      I have been away for a week so just catching up on the wonderful FV.  I know of a family whose daughter went to boarding school in High school.  Maybe I could link you to them?

      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, June 17, 2009 11:09 AM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi from Jo

       

      Hi There Al,

      Wonderful to hear from you.  Wow, I am still absorbing the possibility of Elliot going to boarding school, how amazing would that be.  I hope you get some responses from people as it will be so interesting to learn how they went about it.   I haven't heard of anyone doing it but being a city gal and not having anything to do with boarding schools down here it doesn't put me in that area.

       

      I'll be thinking of you all next week talking about all this stuff and hope you'll have the time to let us know how it goes.  I am so with you on the scary bit, and  exciting at the same time wondering where all these discussions and actions will take us and thrilled to be sharing with likeminded people.  

       

      I feel like I'm getting to know Sharon and Elliot through you so please say hi to them for me.  Are they coming down in August too?

      Jo

       

      From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
      Sent: Wednesday, 17 June 2009 5:26 AM
      To: familyvoices at inpress.pledgonline.com
      Subject: Re: FV: Hi from Jo

       

      Hi Jo 

      It is great to read what you are up to. I know what you meant about the library teacher it, and how much impact those few kind words have.

      Sharon and myself are puting together a similar evening with friends next week. Darrell will be joining us aswell for a few days to disscus the 

      possibility of Elliot going to an Ag school next year. Scarry stuff as the closest Ag school is 4000 km away. has anybody had any experience

      with there kids in an Ag school boarding situation. would love to here positive or negative. 

      I still dont know what date  I will be in Perth but would love to catch up .about mid August.

      Cheers Al Mason----- Original Message ----- 

        From: Family Voices 

        To: familyvoices at inpress.pledgonline.com 

        Sent: Tuesday, June 16, 2009 8:08 PM

        Subject: Re: FV: Hi from Jo

         

        Thats so awesome Jo! You made my night!!!

         

        Jaquie xx

         

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Tuesday, 16 June 2009 6:18 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Hi from Jo

         

        Thanks Maureen, he had a great day today with everyone thrilled to see him again.  Frank said it will be better next week in regard to him helping the teacher now that they have a few ideas so here's hoping.  I walked Dan home from the school and as we passed the teachers car park his old library teacher stopped and yelled out "Dan came to my library to see me today", she had genuine warmth and excitement in her voice - wonderful for me to hear.  Give me a few days to get over this hive of activity and I'll sit down doing some reflections on how tomorrow night goes.  

         

        It's so lovely to hear from you, hoping all is going well over your way,

        Jo

         

        From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
        Sent: Tuesday, 16 June 2009 1:51 PM
        To: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Hi from Jo

         

        Look forward to hearing how it all goes Jo, both with Dan's work placement and your circles meeting.

        Maureen

          ----- Original Message ----- 

          From: Family Voices 

          To: familyvoices at inpress.pledgonline.com 

          Sent: Tuesday, June 16, 2009 11:14 AM

          Subject: Re: FV: Hi from Jo

           

          Thanks everyone, it was lovely to hear from you all.  

           

          Yes Miriam, I would love to drop in for a cuppa and chat, to meet Rachel and to share - who knows who'll be drifting into town for the odd catch up and although this isn't quite the same still a great way to stay in touch.  I can so understand your nervousness and I am in awe of people who can go onto stage with all that confidence.  Please pass on my congratulations to Rachel on all her hard work and wishing you both a fabulous trip.   When do you get back?

           

          Anita, your description of not holding on too tightly and knowing when to let go is the one I struggle with constantly, if you have any tips to share would love to hear them.  When did you start Warren's circle of support and did you develop it yourself or use a model from somewhere,  have you been challenged with any radical suggestions and if so, how did you manage it.  Hope you don't mind all these questions but another one is, do you think the circle would be self sustaining if you were not involved - this is my aim for Dan's support and would love to hear your thoughts.

           

          I have just dropped Dan off to his Work Placement, everyone was very warm and welcoming.  He so knew something was up this morning, wearing spiffy clothes (not the usual school uniform) and I had been telling him he was going to his old school to support the teacher, he was talking to me nonstop and pulling everything off the table and bench tops (I wasn't enjoying that bit) but think it was to do with some nervousness on his part.

           

          One more sleep and we have our evening with friends, will give you some feedback on how the night goes.

          Jo

           

          From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
          Sent: Sunday, 14 June 2009 10:31 PM
          To: familyvoices at inpress.pledgonline.com
          Subject: Re: FV: Hi from Jo

           

          Hi Jo "All Good" and well done in the Nunn household you all deserve lots of praise.
          What a shame distances are so great and we are not in to flitting around the country and visiting each other. Clearly we all have so much Knowledge and warm feelings to share. In the High household we are getting ready for the Ireland journey. We are so pleased how hard Rachel has worked on her presentation and how confident she is feeling. I think it is mum who will be sitting on the side lines who will be the most nervous .
          My warmest wishes to you all Miriam


----------------------------------------------------------------------


          To: familyvoices at inpress.pledgonline.com
          Date: Sun, 14 Jun 2009 09:10:46 +0800
          From: familyvoices at inpress.pledgonline.com
          Subject: FV: Hi from Jo

          Hi There Everyone,

           

          Just an update from the Nunn household and keeping in touch.

           

          You may remember me hinting at some Education stuff I wasn't looking forward to tackling - well last week was the week that we had the meeting.  In WA we are allowed to apply for a 13th year for our children to attend school, we had decided we wanted Daniel to attend an additional year if possible.  Problem was our principal we had a good relationship with and who I know would have supported us moved on in 3rd term 2008.  The acting principal was the deputy who immediately set about trying to get Daniel out of the school at the end of last year - we won that one and he returned to the school this year.  Anyhow, anyhow, anyhow, the new principal came on board this term and I was convinced that the deputy (who was the acting principal) would have had a major influence in whether or not Dan could do a 13th year and I was feeling that we wouldn't get a hearing as to why we felt the need for Dan to continue on for the additional year.  However, off we trot, put our case forward - he says "do you want the short answer or the long answer", I sometimes just don't know when to keep my mouth shut so add a few more points - really just repeating what I'd already said, when I finally stop he says "yes", well, I'm gobsmacked and say in the most intelligent way "what", he then say's "there is a condition" ( so, I am thinking this was just too easy) when he adds "his behaviour will have to improve, I agree and say "place him on a Management Behaviour Program" (laughing) and he says " it's not good when Frank (Dan's Aide) is asking him to go into class and Daniel is bolting out of the school gates and that has to change".  I swear if you weren't listening carefully you would have thought he was serious.  He then tells me he's put all the paper work through and it's been approved by the education department.  We are still feeling a bit shocked and stunned but absolutely thrilled with the outcome.

           

          Another nice story, we have been trying to get Daniel into a Work Placement with no luck to date.  One of the things we have been thinking about is him supporting a teacher in a school and thought his old school would be the place to start as we still know quite a few people working there.  The Coordinator phoned me last week to let me know he's been given a position with his old year 7 teacher to work as an aide beginning next week.  If will be for 5 weeks with a possibility of it continuing.  This type of job fits so well with Daniel and his personality so am very much hoping it will be successful.

           

          On Wednesday night we will be having Dan's first Microboard Meeting so feeling a tad nervous, there's something about inviting people into our lives that leaves us feeling a bit vulnerable - will they come, if they do will they want to be a part of supporting Dan to continue being included in our community, will they walk the talk!!  I want to change the pinwheel model in that it's me at the centre organising everything to something that looks much messier with lots of people organising stuff around Dan - does that make sense?  I will soon find out if it's realistic to achieve and if so will be so much better for Dan and me.

           

          I hope everyone is well and keeping the flu's at bay.  

          Jo

           


----------------------------------------------------------------------

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From familyvoices at inpress.pledgonline.com  Tue Jun 30 06:26:32 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Tue, 30 Jun 2009 23:26:32 +1000
Subject: FV: Jane technology tips
In-Reply-To: <7v2k17$c9j1mf@ipmail05.adl2.internode.on.net>
Message-ID: <7v2k17$c9l6k1@ipmail05.adl2.internode.on.net>

Jane
Another software tip for you.
 
Any youtube videos you might like to put on iTunes you can do it with
another free progam called Zamzar.  Just go to www.ZamZar.com
<http://www.zamzar.com/>  and in the first section enter in the url of the
youtube video (copy and paste the address/link) then choose MP4 as your
conversion type and your email address.  You will be sent an email link to
download the video which you can then easily add into the iTunes library.
 
I use it quite a bit for all manner of different bright (crazy) ideas I
have.
 
Gina
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 30 June 2009 8:42 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
Jane
It sounds good.  


Honestly I am finding technology is very much the way to many people's
hearts.  I can see some of the senior teachers at Mac's school looking
longingly at his 'gear', I know they love getting their hands on the iPhone
to try and learn it at the moment and they certainly seem like they are keen
to learn more.
 
The kids more often than not start sentences with the words "Mac is so lucky
because."  cracks me up.
 
If Sarah is interested in it there is a really cool free program for Mac
computers called FluidTunes.  Provided her laptop has a built in camera she
can move backwards and forwards through her music by waving her arms to make
the program work.  It is basically a basic version of gesture recognition -
it is pretty mad.
 
Keeping fingers crossed the part time job just works nicely no dramas.
 
Gina
  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 30 June 2009 8:02 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
Hello Ladies,
 
Sarah's job looks like this:  When she turned 16 we went thru the process of
getting a DSP which seemed to trigger a chain of events.    Then a job
assessment by centre link  psychologist Hmmmmmmmmm(sorry any psychologist
out there).  Then Sarah was deemed eligible for supported employment.  So we
have been having meetings regularly and learning along the way with no
expectations.
 
On Thursday she was offered two afternoons a week from 12.30 to 4.30 Tues
and Wed. to work at a Community Based org as Girl Friday.  She will be
employed by the Manager of the organization.  The Organization is the only
service in town, which has several services under its roof.  One is the
Supported Employment Agency, where the support worker will come from to
support Sarah at work.
 
The org has a Respite service funded by DSQ, Youth and Aged support worker
with trainee youth worker who Sarah knows from school 1 year older than
Sarah, Drug Arm (who I never see anyone there), Rural Family support Co ord,
partime psychologist young women who I like, Social Worker/community
development worker another young women with young family vibrant person and
numerous other staff admin, support workers etc.  It is a new building which
has built its reputation up in the community over the last 5 years under new
management and committee.
 
The manager is a IT guru and when I told him I was thinking of getting Sarah
a apple computer his eyes lit up, I then told him about Ipod touch and
communication program which he was very keen to see and work with. YEAH That
one just fell out of the sky.  AMAZING.  He explained that part of Sarah's
job is IT and that she would be working with him directly so who knows.  I
have had a meeting with the school who were supportive and have rung org and
arranged exchange of communication methods that they are using.  Have to say
I am a bit scared to say too much out loud incase all crumbles down but
really I cant see any reason to not give this a go.
One thing I have been able to do since coming home from Canada is step back
and let people do.  Maybe because I have been able to get the words of
wisdom from FV and feel safe to share thoughts.
 
Anyway I know this is a journey and no doubt will have its pot holes but I
am truly so thrilled for Sarah that people are giving her a go. I am hoping
that given the opportunity Sarah will shine.
 
Is quite ironic really when I spoke with school they were thrilled but were
concerned because they had organized for Sarah to go to Primary school on  a
Monday afternoon to do work experience in admin.  We will see!!
 
Take care 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: Monday, June 29, 2009 3:14 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
Hi Jane, this is fantastic news about Sarah and a job opportunity. What will
she be doing?
Good on her.. I wish you all well. Maureen
----- Original Message ----- 
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  
To: familyvoices at inpress.pledgonline.com 
Sent: Monday, June 29, 2009 2:18 PM
Subject: Re: FV: Jo seeking help
 
Hi all
Still trying to catch up have now printed off conversations and moving
sheets around house to get time to read.
 
But did want to say I too really like the exchange for pension stuff.  There
is something about having the opportunity to give back and not shoved away
because you are getting paid.????
 
Also to share that Sarah has been offered a job part time, two afternoons a
week which will take her out of school.  She will be supported by Employment
agency.  Is such a weird feeling, bit like grade 1, beginning of high
school?  Happy but I suppose bit scared my god being a mother what a
fantastic journey.
 
Sarah is thrilled!!
 
All the best to everyone
 
Jane Warner/Hudson
 
07 46714737
 

  _____  

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, June 29, 2009 9:52 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
I just wanted to say that I really like the point Maureen makes about the
need for contribution in exchange for the pension...that is really cool in
terms of creating a sense of accountability/responsibility to contribute. We
should do more of that.
 
Jaquie :-)
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 2:53 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
 
Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.
Jill
 
 
 
 
Your wise words Miriam are almost exactly what we have here with Lauren.
Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.
As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"
But it is her money and hard earned.
Maureen
 
----- Original Message -----
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 
To: family voices <mailto:familyvoices at inpress.pledgonline.com> 
Sent: Friday, June 26, 2009 2:28 PM
Subject: Re: FV: Jo seeking help
 
Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 

  _____  

To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence.
Best Wishes
Jill
On 26/06/2009, at 10:37 AM, Family Voices wrote:
 
Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   
 
They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 
 
I would like to print off your emails to share with school if you are ok
with that.
 
Thanks again
Jo
 
From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help
 
Hi Jo
We have had a fair bit of experience with what you are going through.
The CV is a great start,
Lauren's interest is film, theatre and TV and celebrities.
So we started trying to find a position where she could be involved in
something like that.
We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.
There are plenty of learning's here.
One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.
 
Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 
 
This position was paid a normal wage.
However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.
I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.
The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.
 
I could go on and on and on Jo.
We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.
 
She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.
I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.
After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.
 
It was allot of hard work for me.
 
Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.
 
I drove some video organizations mad with "Please let her work
here!"requests.
Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!
 
I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!
 
 
She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.
She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.
 
I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.
 
Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.
 
No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.
 
So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.
 
Good luck Jo.
It's a long and interesting road.
Maureen
----- Original Message -----
From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 
To: familyvoices at inpress.pledgonline.com
Sent: Friday, June 26, 2009 8:09 AM
Subject: FV: Jo seeking help
 
Hi There Everyone,
 
I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 
 
During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.
 
Looking forward to hearing from you.
Jo
 


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From familyvoices at inpress.pledgonline.com  Tue Jun 30 16:26:15 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Wed, 1 Jul 2009 09:26:15 +1000
Subject: FV: Jane technology tips
References: <7v2k17$c9l6k1@ipmail05.adl2.internode.on.net>
Message-ID: <023F84F76BEA468EB15801D2834C84BE@D8XYGK1S>

Jane - This is a wonderful opportunity for Sarah. Sometimes things really do fall from the sky and they work out. So, GO SARAH!!
We will all be keen to hear how she goes
Maureen
  ----- Original Message ----- 
  From: Family Voices 
  To: familyvoices at inpress.pledgonline.com 
  Sent: Tuesday, June 30, 2009 11:26 PM
  Subject: FV: Jane technology tips


  Jane

  Another software tip for you.

   

  Any youtube videos you might like to put on iTunes you can do it with another free progam called Zamzar.  Just go to www.ZamZar.com and in the first section enter in the url of the youtube video (copy and paste the address/link) then choose MP4 as your conversion type and your email address.  You will be sent an email link to download the video which you can then easily add into the iTunes library.

   

  I use it quite a bit for all manner of different bright (crazy) ideas I have.

   

  Gina


------------------------------------------------------------------------------

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Tuesday, 30 June 2009 8:42 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Jo seeking help

   

  Jane

  It sounds good.  



  Honestly I am finding technology is very much the way to many people's hearts.  I can see some of the senior teachers at Mac's school looking longingly at his 'gear', I know they love getting their hands on the iPhone to try and learn it at the moment and they certainly seem like they are keen to learn more.

   

  The kids more often than not start sentences with the words "Mac is so lucky because."  cracks me up.

   

  If Sarah is interested in it there is a really cool free program for Mac computers called FluidTunes.  Provided her laptop has a built in camera she can move backwards and forwards through her music by waving her arms to make the program work.  It is basically a basic version of gesture recognition - it is pretty mad.

   

  Keeping fingers crossed the part time job just works nicely no dramas.

   

  Gina


------------------------------------------------------------------------------

  From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
  Sent: Tuesday, 30 June 2009 8:02 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Jo seeking help

   

  Hello Ladies,

   

  Sarah's job looks like this:  When she turned 16 we went thru the process of getting a DSP which seemed to trigger a chain of events.    Then a job assessment by centre link  psychologist Hmmmmmmmmm(sorry any psychologist out there).  Then Sarah was deemed eligible for supported employment.  So we have been having meetings regularly and learning along the way with no expectations.

   

  On Thursday she was offered two afternoons a week from 12.30 to 4.30 Tues and Wed. to work at a Community Based org as Girl Friday.  She will be employed by the Manager of the organization.  The Organization is the only service in town, which has several services under its roof.  One is the Supported Employment Agency, where the support worker will come from to support Sarah at work.

   

  The org has a Respite service funded by DSQ, Youth and Aged support worker with trainee youth worker who Sarah knows from school 1 year older than Sarah, Drug Arm (who I never see anyone there), Rural Family support Co ord, partime psychologist young women who I like, Social Worker/community development worker another young women with young family vibrant person and numerous other staff admin, support workers etc.  It is a new building which has built its reputation up in the community over the last 5 years under new management and committee.

   

  The manager is a IT guru and when I told him I was thinking of getting Sarah a apple computer his eyes lit up, I then told him about Ipod touch and communication program which he was very keen to see and work with. YEAH That one just fell out of the sky.  AMAZING.  He explained that part of Sarah's job is IT and that she would be working with him directly so who knows.  I have had a meeting with the school who were supportive and have rung org and arranged exchange of communication methods that they are using.  Have to say I am a bit scared to say too much out loud incase all crumbles down but really I cant see any reason to not give this a go.

  One thing I have been able to do since coming home from Canada is step back and let people do.  Maybe because I have been able to get the words of wisdom from FV and feel safe to share thoughts.

   

  Anyway I know this is a journey and no doubt will have its pot holes but I am truly so thrilled for Sarah that people are giving her a go. I am hoping that given the opportunity Sarah will shine.

   

  Is quite ironic really when I spoke with school they were thrilled but were concerned because they had organized for Sarah to go to Primary school on  a Monday afternoon to do work experience in admin.  We will see!!

   

  Take care 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: Monday, June 29, 2009 3:14 PM
  To: familyvoices at inpress.pledgonline.com
  Subject: Re: FV: Jo seeking help

   

  Hi Jane, this is fantastic news about Sarah and a job opportunity. What will she be doing?

  Good on her.. I wish you all well. Maureen

    ----- Original Message ----- 

    From: Family Voices 

    To: familyvoices at inpress.pledgonline.com 

    Sent: Monday, June 29, 2009 2:18 PM

    Subject: Re: FV: Jo seeking help

     

    Hi all

    Still trying to catch up have now printed off conversations and moving sheets around house to get time to read.

     

    But did want to say I too really like the exchange for pension stuff.  There is something about having the opportunity to give back and not shoved away because you are getting paid.????

     

    Also to share that Sarah has been offered a job part time, two afternoons a week which will take her out of school.  She will be supported by Employment agency.  Is such a weird feeling, bit like grade 1, beginning of high school?  Happy but I suppose bit scared my god being a mother what a fantastic journey.

     

    Sarah is thrilled!!

     

    All the best to everyone

     

    Jane Warner/Hudson

     

    07 46714737

     


----------------------------------------------------------------------------

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Monday, June 29, 2009 9:52 AM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Jo seeking help

     

    I just wanted to say that I really like the point Maureen makes about the need for contribution in exchange for the pension...that is really cool in terms of creating a sense of accountability/responsibility to contribute. We should do more of that.

     

    Jaquie J

     

    From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
    Sent: Friday, 26 June 2009 2:53 PM
    To: familyvoices at inpress.pledgonline.com
    Subject: Re: FV: Jo seeking help

     

     

    Yes, a sense of worth is the critical and most important outcome.  Ben's paid employment for 19 hours/week across five days is complemented with two half days of voluntary work.  He is a community bus assistant one afternoon where he assists elderly passengers on and off the bus  with their parcels and helps with reshelving in the Library another afternoon.  Both these unpaid jobs contribute to his self worth and bring him into contact with  community.  I don't think working full time in his paid work would work for Ben even if it was offered.  The bus job is the one where he feels that he is contributing most and the passengers give him chocolates for Christmas!  The job he enjoys most is the Library and I don't know why.   Although he enjoys his paid work to a point, it depends on who he is working with.  The times it has been difficult are when he has been working with people who have not been supportive or inclusive.  He does not verbalise this but  when it is happening  he gets into some unacceptable behaviour at work and develops some strong obsessive compulsive behaviours.  This has been the really hard stuff to work through as work decided that these behaviours are part of his disability and not a result of his environment.  There have been many times when I considered him leaving, but knowing the difficulty he would have in getting other activities to fill his day enjoyably, it would add to his feelings of low self esteem.  Another activity which adds to his sense of importance is going to his 87 year old grandmother's once a week for dinner and stay the night.  He says he goes there to take his grandfather's place and look after her.  It has been a great joy to see their relationship develop over the past couple of years as my mother , although loving him dearly,  has always thought of him as a little boy with no regard for his adulthood.  Now, she looks forward to his stay, spends all day cooking for him (4 courses) and says she has the best night's sleep when he is there. He also brings home a left over meal, which he pointedly says to me the next night "I have my own meal tonight"  Love it!  The balance is fine at the moment but daren't take my eye off it.

    Jill

     

     

     

     

      Your wise words Miriam are almost exactly what we have here with Lauren.

      Her voluntary position is as important as any paid position. We have emphasised her pension is given to her and for that she should contribute to the world. She can understand that. She is a happy volunteer, She is actually very proud of it and wouldn't hear of anyone underestimating it. When a paid job comes along it is all a bonus.

      As for her paid position at the market. She has usually spent the pay before she leaves the market! Talk about "put back!"

      But it is her money and hard earned.

      Maureen

       

        ----- Original Message -----

        From: Family Voices

        To: family voices

        Sent: Friday, June 26, 2009 2:28 PM

        Subject: Re: FV: Jo seeking help

         

        Jo all these messages to you make me feel really guilty about getting work for Rachel . We did start to go down that journey when she first left school and like many found it all so depressing. The jobs  we managed to get her into were tokenism and did not last or were simply things she did not enjoy doing."I am not cleaning out bird cages" and it was all greatly upseting for her.
        So we took another path. We first of all helped Rachel to understand that she did get a pension each week and therefore was assured of an income. However this was like being paid and she was expected(by us) to be willing to put something back into the community.
        We did not care what it was but she needed to go out of the house several days a week to do something, This could be a Gym session ,typing and helping with the children at the day care centre, typing for the Salvation army, offering to set up and clear up for a sporting or social club. dance lesson , walking a friends dogs. a TAFE course. It did not matter what it was. Some of these things she needed someone with her and some she did not
        What was important for us was that she gained a good feeling about giving back and not just taking her pension for granted and doing nothing.
        The activities she took on were ones which followed her interest and so she was fully committed to them . This enabled  her to be welcome in the setting and offered no stress to people requiring her to be paid.
        As time went by Rachel skills were recognised and from time to time she is paid for work she does and she is delighted. The great thing about this for us and for her is her life is full and we seem never to have to worry about what she will be doing next week.We are however the constant taxi driver and need to be ever vigilant to note the next door waiting to be opened.
        I do not know if she will ever get a full time paid job but she has learnt about the work ethic and thankfully appraoches each new opportunity with enthusiasm .
        I am sure this is letting employers off the hook but for Rachel her life is full of work, sometimes very demanding but also rewarding and with no one giving her the charity vote
        Miriam
         


------------------------------------------------------------------------

        To: familyvoices at inpress.pledgonline.com
        Date: Fri, 26 Jun 2009 12:31:18 +0930
        From: familyvoices at inpress.pledgonline.com
        Subject: Re: FV: Jo seeking help

        OK about the forwarding my email Jo.  You are already doing the positive stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales reminded me of a situation we had with Ben. He was doing some work experience with a house cleaning team.  House cleaning is the least thing he would be interested in doing so it was doomed from the beginning!  (another thing to keep in mind......not to set up for failure by doing things that Dan has no interest in).  Well, the person in charge rang me to tell me that Ben was not doing at all well and that 'people like him' do best collecting trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the conversation ended very quickly.  That person actually apologised about five years later after he heard how well Ben was doing in his job as an admin assistant.   When suggestions like this are put forward, I now realise that there is no point into putting effort and time into these people....they are wasting Ben's time.   Surround yourself and Dan with people who believe in what you want to achieve and do not have their own agendas.  Ben has had his job for 19 years and is taking his second lot of long service leave in August.  It hasn't been without its worrying times, but what I now realise is that most of the problems were caused by other people and not by Ben.  It is so easy to fall into "it must be the person who has the disability" as the problem and then as the parent, try to fix the problem  by trying to 'fix' our son or daughter.  It is also good cop out stuff for some people so that they don't have to put in more effort.  Hopefully I have learned to be a bit more circumspect.  These issues are similar to school issues when inclusion is not the real agenda.  It has all been worth every bit of worry, effort etc as Ben's life is so rich with all the contact he has in community and the knowledge that 'ordinary' people have learned from his community presence.

        Best Wishes

        Jill

        On 26/06/2009, at 10:37 AM, Family Voices wrote:

           

          Thanks so much Jill and Maureen for your support, I appreciated the stories Maureen of the difficulties and am taking note for future reference, I had to laugh at the possible "Logging in the Otways" job and can see how ridiculous it can get and how important it is to keep a sense of humour.  The agencies here will not support Dan because of his disabilities - they have all this criteria that he has to fit in to for him to be helped, so have known for many years that we will have to find him jobs ourselves - I so understand the comment about "it being too difficult for them", it's an internal battle I've had for many years, even about the schooling.  Am going to make a big effort to take on your advice Jill, to be positive and raise my expectations.   

           

          They are going to make up Dan's resume in his IT class, he will be doing it - they came up with this idea themselves.  I think I may have finally gotten the knack of planting seeds in a certain way where they are coming up with the ideas.  It's only taken me 12 years!!  I couldn't believe how the meeting went with the enthusiasm and ideas flowing - more than I could come up with on my own. 

           

          I would like to print off your emails to share with school if you are ok with that.

           

          Thanks again

          Jo

           

          From: familyvoices-bounces at inpress.pledgonline.com [mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family Voices
          Sent: Friday, 26 June 2009 8:36 AM
          To: familyvoices at inpress.pledgonline.com
          Subject: Re: FV: Jo seeking help

           

          Hi Jo

          We have had a fair bit of experience with what you are going through.

          The CV is a great start,

          Lauren's interest is film, theatre and TV and celebrities.

          So we started trying to find a position where she could be involved in something like that.

          We went totally mainstream, and the only thing that was different from any other young person going for a position is that she had a support worker with her.

          There are plenty of learning's here.

          One theatre that she went to took all her information and she filled out "The form"and they said the next step would be a phone interview! Well, that did happen when I wasn't home and, quiet honestly, Lauren sounds more like a 10 year old than an (at the time) 18 year old when she is on the phone. After that they wrote to her and said don't bother EVER applying to our theatre again! She was devastated and so was I. We took a big step back. I have since heard that allot of places do a first interview on the phone and once you get past that you get to the next round.

           

          Next theatre Lauren got the position fair and square and the management were most acceptable and actually surprised me at how accepting they were. However, under the manager came the regular staff, who had no idea how to work with someone with a disability. The support worker went with her and she was selling programs at the theatre entrance. The podium she was to stand on was dangerous for her and she had to balance her books! The support worker was on the ball and Lauren was working very hard. However 4 hours on her feet standing on a small platform is physically too much for her and they offered her a job ion the cloakroom. That was fine,only when I went to pick her up she was sitting in what looked like a cupboard! She was so miserable as she had been there for 4 hours and spoken to no one and was terribly concerned she had got things (Peoples belongings) mixed up!I couldn't get her to go back she was so stressed! The support worker couldn't fit in the cupboard so wandered around the theatre. 

           

          This position was paid a normal wage.

          However, even though meagre, I had to report it to Centrelink every fortnight, even if she didn't get a shift and it never incringed on her pension.

          I was so worried about phoning them on the right day at the right time, it became a big bug bare! I did it and hated it. Lauren couldn't possibly manage that part of it so it all became my responsibility and I am trying to step back out of her life not take on more responsibility. So just be aware of the Centrelink responsibility.

          The learning's in this experience is, that we should have supported the organization better and perhaps they could have supported Lauren better. I always felt the management wanted to but didn't know how, and I wasn't confident enough to approach them - I kept thinking that Lauren would be too difficult for them so they wouldn't take her on. I think I was wrong.

           

          I could go on and on and on Jo.

          We have had 7 years of interviews and let downs and it has been terribly difficult to keep Lauren's morale high.

           

          She was offered a traineeship through a government job seeking organization. The young woman who was assisting Lauren to find a job would get Lauren all excited every Monday when the jobs were given to the organization. Lauren would always phone me from the place with much excitement about working at McDonalds clearing tables or Hungry Jacks serving customers (All things she couldn't physically do) and then one day in much excitement she was told she was eligible for a traineeship and it was for "Logging in the Otways"...I very calmly spoke to the young woman who was helping Lauren and explained Lauren can't use a chainsaw. The young lady had no idea what "Logging in the Otways"meant. - in case you don't know what the Otways is, it is a mountain range near the great ocean road in Victoria.

          I am only telling you this Jo, because if we didn't keep a sense of humour we would have gone in sane during our efforts to assist Lauren.

          After the chainsaw incident, we took Lauren away from the organization and went it alone completely.

           

          It was allot of hard work for me.

           

          Lauren had work experience at a video store when she was at school. Infact she had three lots of work experience at three different stores and she was very good at re winding videos and selecting the movies for in house and dusting shelves.

           

          I drove some video organizations mad with "Please let her work here!"requests.

          Video Easy put an interesting flyer in our letterbox that looked like a wanted poster. At the time they were looking for customers. We have a printing business, so I took it to work and made it look like a wanted poster for Lauren looking for a job at Video Easy and I sent it back to their head office and every video easy store near our home. I thought it was very clever, but no one from Video Easy answered the request!

           

          I spoke for hours to the HR people at Blockbuster. I got them all sorts of information about employing people with a disability. Lauren would be very happy working one shift a week. That's probably all she could have done. I was told they don't promise any of their staff a shift so it would be discrimination against all the other employees!!

           

           

          She now has a voluntary position as an usher in a cinema. She loves it. She is very valued by the organization she works for and she has flexibility around her health and her ability.

          She also has a paid job at a farmers market where she works in the citrus stall handing out samples of fruit and making orange juice. She is learning to serve customers. That is only once a month.

           

          I could go on and on....some good people, some terrible, some really "get it"others haven't got a clue.

           

          Now Lauren is 8 years out of school, what I notice around the group of friends who left school at the same time is..The ones who's parents have really assisted with job hunting, have got somewhere, and those who's parents can't find the time to assist them and go to interviews with them, well, those young ones are still on the "job training wheel" or work in disability training programs or the workshops type places.

           

          No one comes knocking at your door saying "I have a job for Dan" you have to be out there and searching for it.

           

          So my suggestion is..........Be creative, make sure he has good support, make sure the organization he works with are well supported too, and that their staff are patient and caring. Try not to let all the knockbacks get you down and I hope you don't have too many of them.

           

          Good luck Jo.

          It's a long and interesting road.

          Maureen

            ----- Original Message -----

            From: Family Voices

            To: familyvoices at inpress.pledgonline.com

            Sent: Friday, June 26, 2009 8:09 AM

            Subject: FV: Jo seeking help

             

            Hi There Everyone,

             

            I had a meeting with the school today about Daniels Work Placement (used to be called Work Experience when I was at school).  Anyhow they want to do up a Resume with Daniel in IT - lots of photos of Dan doing things that could potentially fit in with a work situation.   When the Resume is complete Daniel and his Aide will take it around to businesses we have identified as being suitable places for him to work. 

             

            During the meeting I said that I felt it's important we use the right language and that we don't set Daniel up to be a charitable project.  I said that some people may initially have Daniel work for them for charitable reasons but if we use positive language along with them getting to know Dan this attitude has potential to shift as I have seen occur in other areas of his life.  The people I met with today were really keen to understand the correct language to use when introducing Dan to potential employers and asked me to provide them with information.  I am still struggling with the correct language myself and would love it if you could suggest ways of how we first introduce Dan and so on.  If anyone has done a Resume and wouldn't mind sharing we would find it very useful.  And anything else you can think of to help Dan expand his work experience.

             

            Looking forward to hearing from you.

            Jo

             



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From familyvoices at inpress.pledgonline.com  Tue Jun 30 19:22:14 2009
From: familyvoices at inpress.pledgonline.com (Family Voices)
Date: Wed, 1 Jul 2009 10:22:14 +0800
Subject: FV: Jane technology tips
In-Reply-To: <023F84F76BEA468EB15801D2834C84BE@D8XYGK1S>
References: <7v2k17$c9l6k1@ipmail05.adl2.internode.on.net>
	<023F84F76BEA468EB15801D2834C84BE@D8XYGK1S>
Message-ID: <001401c9f9f2$bf78d9e0$3e6a8da0$@net.au>

Here's CHEERS from me too Sarah, you go gettem gal.  When is your first day?

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Wednesday, 1 July 2009 7:26 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jane technology tips

 

Jane - This is a wonderful opportunity for Sarah. Sometimes things really do
fall from the sky and they work out. So, GO SARAH!!

We will all be keen to hear how she goes

Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Tuesday, June 30, 2009 11:26 PM

Subject: FV: Jane technology tips

 

Jane

Another software tip for you.

 

Any youtube videos you might like to put on iTunes you can do it with
another free progam called Zamzar.  Just go to www.ZamZar.com and in the
first section enter in the url of the youtube video (copy and paste the
address/link) then choose MP4 as your conversion type and your email
address.  You will be sent an email link to download the video which you can
then easily add into the iTunes library.

 

I use it quite a bit for all manner of different bright (crazy) ideas I
have.

 

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 30 June 2009 8:42 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Jane

It sounds good.  



Honestly I am finding technology is very much the way to many people's
hearts.  I can see some of the senior teachers at Mac's school looking
longingly at his 'gear', I know they love getting their hands on the iPhone
to try and learn it at the moment and they certainly seem like they are keen
to learn more.

 

The kids more often than not start sentences with the words "Mac is so lucky
because."  cracks me up.

 

If Sarah is interested in it there is a really cool free program for Mac
computers called FluidTunes.  Provided her laptop has a built in camera she
can move backwards and forwards through her music by waving her arms to make
the program work.  It is basically a basic version of gesture recognition -
it is pretty mad.

 

Keeping fingers crossed the part time job just works nicely no dramas.

 

Gina


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Tuesday, 30 June 2009 8:02 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hello Ladies,

 

Sarah's job looks like this:  When she turned 16 we went thru the process of
getting a DSP which seemed to trigger a chain of events.    Then a job
assessment by centre link  psychologist Hmmmmmmmmm(sorry any psychologist
out there).  Then Sarah was deemed eligible for supported employment.  So we
have been having meetings regularly and learning along the way with no
expectations.

 

On Thursday she was offered two afternoons a week from 12.30 to 4.30 Tues
and Wed. to work at a Community Based org as Girl Friday.  She will be
employed by the Manager of the organization.  The Organization is the only
service in town, which has several services under its roof.  One is the
Supported Employment Agency, where the support worker will come from to
support Sarah at work.

 

The org has a Respite service funded by DSQ, Youth and Aged support worker
with trainee youth worker who Sarah knows from school 1 year older than
Sarah, Drug Arm (who I never see anyone there), Rural Family support Co ord,
partime psychologist young women who I like, Social Worker/community
development worker another young women with young family vibrant person and
numerous other staff admin, support workers etc.  It is a new building which
has built its reputation up in the community over the last 5 years under new
management and committee.

 

The manager is a IT guru and when I told him I was thinking of getting Sarah
a apple computer his eyes lit up, I then told him about Ipod touch and
communication program which he was very keen to see and work with. YEAH That
one just fell out of the sky.  AMAZING.  He explained that part of Sarah's
job is IT and that she would be working with him directly so who knows.  I
have had a meeting with the school who were supportive and have rung org and
arranged exchange of communication methods that they are using.  Have to say
I am a bit scared to say too much out loud incase all crumbles down but
really I cant see any reason to not give this a go.

One thing I have been able to do since coming home from Canada is step back
and let people do.  Maybe because I have been able to get the words of
wisdom from FV and feel safe to share thoughts.

 

Anyway I know this is a journey and no doubt will have its pot holes but I
am truly so thrilled for Sarah that people are giving her a go. I am hoping
that given the opportunity Sarah will shine.

 

Is quite ironic really when I spoke with school they were thrilled but were
concerned because they had organized for Sarah to go to Primary school on  a
Monday afternoon to do work experience in admin.  We will see!!

 

Take care 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: Monday, June 29, 2009 3:14 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jane, this is fantastic news about Sarah and a job opportunity. What will
she be doing?

Good on her.. I wish you all well. Maureen

----- Original Message ----- 

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com>  

To: familyvoices at inpress.pledgonline.com 

Sent: Monday, June 29, 2009 2:18 PM

Subject: Re: FV: Jo seeking help

 

Hi all

Still trying to catch up have now printed off conversations and moving
sheets around house to get time to read.

 

But did want to say I too really like the exchange for pension stuff.  There
is something about having the opportunity to give back and not shoved away
because you are getting paid.????

 

Also to share that Sarah has been offered a job part time, two afternoons a
week which will take her out of school.  She will be supported by Employment
agency.  Is such a weird feeling, bit like grade 1, beginning of high
school?  Happy but I suppose bit scared my god being a mother what a
fantastic journey.

 

Sarah is thrilled!!

 

All the best to everyone

 

Jane Warner/Hudson

 

07 46714737

 


  _____  


From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Monday, June 29, 2009 9:52 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

I just wanted to say that I really like the point Maureen makes about the
need for contribution in exchange for the pension...that is really cool in
terms of creating a sense of accountability/responsibility to contribute. We
should do more of that.

 

Jaquie J

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 2:53 PM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

 

Yes, a sense of worth is the critical and most important outcome.  Ben's
paid employment for 19 hours/week across five days is complemented with two
half days of voluntary work.  He is a community bus assistant one afternoon
where he assists elderly passengers on and off the bus  with their parcels
and helps with reshelving in the Library another afternoon.  Both these
unpaid jobs contribute to his self worth and bring him into contact with
community.  I don't think working full time in his paid work would work for
Ben even if it was offered.  The bus job is the one where he feels that he
is contributing most and the passengers give him chocolates for Christmas!
The job he enjoys most is the Library and I don't know why.   Although he
enjoys his paid work to a point, it depends on who he is working with.  The
times it has been difficult are when he has been working with people who
have not been supportive or inclusive.  He does not verbalise this but  when
it is happening  he gets into some unacceptable behaviour at work and
develops some strong obsessive compulsive behaviours.  This has been the
really hard stuff to work through as work decided that these behaviours are
part of his disability and not a result of his environment.  There have been
many times when I considered him leaving, but knowing the difficulty he
would have in getting other activities to fill his day enjoyably, it would
add to his feelings of low self esteem.  Another activity which adds to his
sense of importance is going to his 87 year old grandmother's once a week
for dinner and stay the night.  He says he goes there to take his
grandfather's place and look after her.  It has been a great joy to see
their relationship develop over the past couple of years as my mother ,
although loving him dearly,  has always thought of him as a little boy with
no regard for his adulthood.  Now, she looks forward to his stay, spends all
day cooking for him (4 courses) and says she has the best night's sleep when
he is there. He also brings home a left over meal, which he pointedly says
to me the next night "I have my own meal tonight"  Love it!  The balance is
fine at the moment but daren't take my eye off it.

Jill

 

 

 

 

Your wise words Miriam are almost exactly what we have here with Lauren.

Her voluntary position is as important as any paid position. We have
emphasised her pension is given to her and for that she should contribute to
the world. She can understand that. She is a happy volunteer, She is
actually very proud of it and wouldn't hear of anyone underestimating it.
When a paid job comes along it is all a bonus.

As for her paid position at the market. She has usually spent the pay before
she leaves the market! Talk about "put back!"

But it is her money and hard earned.

Maureen

 

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: family voices <mailto:familyvoices at inpress.pledgonline.com> 

Sent: Friday, June 26, 2009 2:28 PM

Subject: Re: FV: Jo seeking help

 

Jo all these messages to you make me feel really guilty about getting work
for Rachel . We did start to go down that journey when she first left school
and like many found it all so depressing. The jobs  we managed to get her
into were tokenism and did not last or were simply things she did not enjoy
doing."I am not cleaning out bird cages" and it was all greatly upseting for
her.
So we took another path. We first of all helped Rachel to understand that
she did get a pension each week and therefore was assured of an income.
However this was like being paid and she was expected(by us) to be willing
to put something back into the community.
We did not care what it was but she needed to go out of the house several
days a week to do something, This could be a Gym session ,typing and helping
with the children at the day care centre, typing for the Salvation army,
offering to set up and clear up for a sporting or social club. dance lesson
, walking a friends dogs. a TAFE course. It did not matter what it was. Some
of these things she needed someone with her and some she did not
What was important for us was that she gained a good feeling about giving
back and not just taking her pension for granted and doing nothing.
The activities she took on were ones which followed her interest and so she
was fully committed to them . This enabled  her to be welcome in the setting
and offered no stress to people requiring her to be paid.
As time went by Rachel skills were recognised and from time to time she is
paid for work she does and she is delighted. The great thing about this for
us and for her is her life is full and we seem never to have to worry about
what she will be doing next week.We are however the constant taxi driver and
need to be ever vigilant to note the next door waiting to be opened.
I do not know if she will ever get a full time paid job but she has learnt
about the work ethic and thankfully appraoches each new opportunity with
enthusiasm .
I am sure this is letting employers off the hook but for Rachel her life is
full of work, sometimes very demanding but also rewarding and with no one
giving her the charity vote
Miriam
 


  _____  


To: familyvoices at inpress.pledgonline.com
Date: Fri, 26 Jun 2009 12:31:18 +0930
From: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

OK about the forwarding my email Jo.  You are already doing the positive
stuff  as the meeting wouldn't have gone the way it did!  Maureen's tales
reminded me of a situation we had with Ben. He was doing some work
experience with a house cleaning team.  House cleaning is the least thing he
would be interested in doing so it was doomed from the beginning!  (another
thing to keep in mind......not to set up for failure by doing things that
Dan has no interest in).  Well, the person in charge rang me to tell me that
Ben was not doing at all well and that 'people like him' do best collecting
trolleys at supermarkets!  He hadn't even met Ben!!!!!!  Needless to say the
conversation ended very quickly.  That person actually apologised about five
years later after he heard how well Ben was doing in his job as an admin
assistant.   When suggestions like this are put forward, I now realise that
there is no point into putting effort and time into these people....they are
wasting Ben's time.   Surround yourself and Dan with people who believe in
what you want to achieve and do not have their own agendas.  Ben has had his
job for 19 years and is taking his second lot of long service leave in
August.  It hasn't been without its worrying times, but what I now realise
is that most of the problems were caused by other people and not by Ben.  It
is so easy to fall into "it must be the person who has the disability" as
the problem and then as the parent, try to fix the problem  by trying to
'fix' our son or daughter.  It is also good cop out stuff for some people so
that they don't have to put in more effort.  Hopefully I have learned to be
a bit more circumspect.  These issues are similar to school issues when
inclusion is not the real agenda.  It has all been worth every bit of worry,
effort etc as Ben's life is so rich with all the contact he has in community
and the knowledge that 'ordinary' people have learned from his community
presence.

Best Wishes

Jill

On 26/06/2009, at 10:37 AM, Family Voices wrote:

 

Thanks so much Jill and Maureen for your support, I appreciated the stories
Maureen of the difficulties and am taking note for future reference, I had
to laugh at the possible "Logging in the Otways" job and can see how
ridiculous it can get and how important it is to keep a sense of humour.
The agencies here will not support Dan because of his disabilities - they
have all this criteria that he has to fit in to for him to be helped, so
have known for many years that we will have to find him jobs ourselves - I
so understand the comment about "it being too difficult for them", it's an
internal battle I've had for many years, even about the schooling.  Am going
to make a big effort to take on your advice Jill, to be positive and raise
my expectations.   

 

They are going to make up Dan's resume in his IT class, he will be doing it
- they came up with this idea themselves.  I think I may have finally gotten
the knack of planting seeds in a certain way where they are coming up with
the ideas.  It's only taken me 12 years!!  I couldn't believe how the
meeting went with the enthusiasm and ideas flowing - more than I could come
up with on my own. 

 

I would like to print off your emails to share with school if you are ok
with that.

 

Thanks again

Jo

 

From: familyvoices-bounces at inpress.pledgonline.com
[mailto:familyvoices-bounces at inpress.pledgonline.com] On Behalf Of Family
Voices
Sent: Friday, 26 June 2009 8:36 AM
To: familyvoices at inpress.pledgonline.com
Subject: Re: FV: Jo seeking help

 

Hi Jo

We have had a fair bit of experience with what you are going through.

The CV is a great start,

Lauren's interest is film, theatre and TV and celebrities.

So we started trying to find a position where she could be involved in
something like that.

We went totally mainstream, and the only thing that was different from any
other young person going for a position is that she had a support worker
with her.

There are plenty of learning's here.

One theatre that she went to took all her information and she filled out
"The form"and they said the next step would be a phone interview! Well, that
did happen when I wasn't home and, quiet honestly, Lauren sounds more like a
10 year old than an (at the time) 18 year old when she is on the phone.
After that they wrote to her and said don't bother EVER applying to our
theatre again! She was devastated and so was I. We took a big step back. I
have since heard that allot of places do a first interview on the phone and
once you get past that you get to the next round.

 

Next theatre Lauren got the position fair and square and the management were
most acceptable and actually surprised me at how accepting they were.
However, under the manager came the regular staff, who had no idea how to
work with someone with a disability. The support worker went with her and
she was selling programs at the theatre entrance. The podium she was to
stand on was dangerous for her and she had to balance her books! The support
worker was on the ball and Lauren was working very hard. However 4 hours on
her feet standing on a small platform is physically too much for her and
they offered her a job ion the cloakroom. That was fine,only when I went to
pick her up she was sitting in what looked like a cupboard! She was so
miserable as she had been there for 4 hours and spoken to no one and was
terribly concerned she had got things (Peoples belongings) mixed up!I
couldn't get her to go back she was so stressed! The support worker couldn't
fit in the cupboard so wandered around the theatre. 

 

This position was paid a normal wage.

However, even though meagre, I had to report it to Centrelink every
fortnight, even if she didn't get a shift and it never incringed on her
pension.

I was so worried about phoning them on the right day at the right time, it
became a big bug bare! I did it and hated it. Lauren couldn't possibly
manage that part of it so it all became my responsibility and I am trying to
step back out of her life not take on more responsibility. So just be aware
of the Centrelink responsibility.

The learning's in this experience is, that we should have supported the
organization better and perhaps they could have supported Lauren better. I
always felt the management wanted to but didn't know how, and I wasn't
confident enough to approach them - I kept thinking that Lauren would be too
difficult for them so they wouldn't take her on. I think I was wrong.

 

I could go on and on and on Jo.

We have had 7 years of interviews and let downs and it has been terribly
difficult to keep Lauren's morale high.

 

She was offered a traineeship through a government job seeking organization.
The young woman who was assisting Lauren to find a job would get Lauren all
excited every Monday when the jobs were given to the organization. Lauren
would always phone me from the place with much excitement about working at
McDonalds clearing tables or Hungry Jacks serving customers (All things she
couldn't physically do) and then one day in much excitement she was told she
was eligible for a traineeship and it was for "Logging in the Otways"...I
very calmly spoke to the young woman who was helping Lauren and explained
Lauren can't use a chainsaw. The young lady had no idea what "Logging in the
Otways"meant. - in case you don't know what the Otways is, it is a mountain
range near the great ocean road in Victoria.

I am only telling you this Jo, because if we didn't keep a sense of humour
we would have gone in sane during our efforts to assist Lauren.

After the chainsaw incident, we took Lauren away from the organization and
went it alone completely.

 

It was allot of hard work for me.

 

Lauren had work experience at a video store when she was at school. Infact
she had three lots of work experience at three different stores and she was
very good at re winding videos and selecting the movies for in house and
dusting shelves.

 

I drove some video organizations mad with "Please let her work
here!"requests.

Video Easy put an interesting flyer in our letterbox that looked like a
wanted poster. At the time they were looking for customers. We have a
printing business, so I took it to work and made it look like a wanted
poster for Lauren looking for a job at Video Easy and I sent it back to
their head office and every video easy store near our home. I thought it was
very clever, but no one from Video Easy answered the request!

 

I spoke for hours to the HR people at Blockbuster. I got them all sorts of
information about employing people with a disability. Lauren would be very
happy working one shift a week. That's probably all she could have done. I
was told they don't promise any of their staff a shift so it would be
discrimination against all the other employees!!

 

 

She now has a voluntary position as an usher in a cinema. She loves it. She
is very valued by the organization she works for and she has flexibility
around her health and her ability.

She also has a paid job at a farmers market where she works in the citrus
stall handing out samples of fruit and making orange juice. She is learning
to serve customers. That is only once a month.

 

I could go on and on....some good people, some terrible, some really "get
it"others haven't got a clue.

 

Now Lauren is 8 years out of school, what I notice around the group of
friends who left school at the same time is..The ones who's parents have
really assisted with job hunting, have got somewhere, and those who's
parents can't find the time to assist them and go to interviews with them,
well, those young ones are still on the "job training wheel" or work in
disability training programs or the workshops type places.

 

No one comes knocking at your door saying "I have a job for Dan" you have to
be out there and searching for it.

 

So my suggestion is..........Be creative, make sure he has good support,
make sure the organization he works with are well supported too, and that
their staff are patient and caring. Try not to let all the knockbacks get
you down and I hope you don't have too many of them.

 

Good luck Jo.

It's a long and interesting road.

Maureen

----- Original Message -----

From: Family Voices <mailto:familyvoices at inpress.pledgonline.com> 

To: familyvoices at inpress.pledgonline.com

Sent: Friday, June 26, 2009 8:09 AM

Subject: FV: Jo seeking help

 

Hi There Everyone,

 

I had a meeting with the school today about Daniels Work Placement (used to
be called Work Experience when I was at school).  Anyhow they want to do up
a Resume with Daniel in IT - lots of photos of Dan doing things that could
potentially fit in with a work situation.   When the Resume is complete
Daniel and his Aide will take it around to businesses we have identified as
being suitable places for him to work. 

 

During the meeting I said that I felt it's important we use the right
language and that we don't set Daniel up to be a charitable project.  I said
that some people may initially have Daniel work for them for charitable
reasons but if we use positive language along with them getting to know Dan
this attitude has potential to shift as I have seen occur in other areas of
his life.  The people I met with today were really keen to understand the
correct language to use when introducing Dan to potential employers and
asked me to provide them with information.  I am still struggling with the
correct language myself and would love it if you could suggest ways of how
we first introduce Dan and so on.  If anyone has done a Resume and wouldn't
mind sharing we would find it very useful.  And anything else you can think
of to help Dan expand his work experience.

 

Looking forward to hearing from you.

Jo

 



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