Re: Ds-Autism Support Groups (meantions prayer)

[Guest guest]

I also set mine up so that there will be teen volunteers there to assist the

children so that the parents are free to talk. Inclusion AND support is my

goal. For the teens I contacted the teens at church and also went to my

daughter's high school and got with the Key Club and other service

organizations. The key club here already volunteers with special olympics.

Sept is hte first meeting. pray is your the praying type please.

http://thekitchenexperiments.blogspot.com/

>

> >

> >

> > We all need to spearhead support groups for families like ours in our own

> > communities.

> > Ds-AUTISM support groups!

> >

> > So how to we start our own groups and run them well?

> >

> > Desi

> >

> > ________________________________

> > From: gldcst <gldcst@... <gldcst%40comcast.net>>

> > To:

> > Sent: Tue, August 31, 2010 8:34:06 AM

> > Subject: Re: Autism Every Day

> >

> >

> > Shane,

> > I didn't mean to imply that the video was not valid for educational

> > purposes to

> > those who just don't get it. Believe me....I forwarded it to all my family

> > members and friends who were not close enough to understand. I believe the

> > general response was something like " Eeeww! " . It did have the effect of

> > removing

> > the blinders and revealing that autism was a bit more than being able to

> > count

> > cards in a casino or to compose beautiful music on piano. So many folks at

> > that

> > time had the " savant " concept of autism thanks to " Rainman " the film.

> >

> > Jumping to your last pragraph:

> >

> > >>>>>But then that reminded me that 7-10% of kids with DS have an autism

> > spectrum diagnosis. Would DS of Louisville cater to our crowd? Does anyone

> > with the DS community cater to our crowd? Or are we left alone to find

> > solace

> > on this list serve? Are we down syndromes " dirty secret " , or can we step up

> > to

> > plate and be part of the wider DS community? These are challenges that I am

> > now

> > mulling over...<<<<<<<

> >

> > Yes! we are Down Syndrome's " dirty little secret " in my opinion. Not only

> > that

> > but we are Autism's " dirty little secret " as well. Many Autism support

> > groups

> > are not...or didn't used to be anyway......very supportive of kids who are

> > " retarded " . Parents of autistic kids used to feel their kids might be

> > recovered

> > and once recovered would be normal or above average in intelligence. Not so

> > with

> > ours.

> >

> > I think it's wonderful when I hear of actual face to face support groups

> > for the

> > dual dx being formed. I realize they are few and far between. Precisely

> > because

> > our kids are who they are we need to be so utterly wrapped up in their

> > progress,

> > and health, and education that we have little time to advocate publically

> > and to

> > be involved in the bigger picture. So I guess the question is what are you

> > (we)

> > going to do about it? What can we do about it?

> >

> > I try to stay as active as possible on other groups.... " just " DS groups

> > where I

> > find myself often feeling jealous and a bit spiteful, but am also able to

> > jump

> > in when I read of someone new with a child exhibiting early signs of

> > autism. My

> > skin has become a bit thicker over the years and my daughter has also

> > calmed

> > down quite a bit since the early days of severe autism and behaviors and

> > life

> > threatening illnesses.

> >

> > How would you suggest we step up to the plate to become part of the wider

> > DS

> > community? I think most of us here started out at support groups for the

> > wider

> > DS community and found it much too painful as well as simply irrelevant for

> > the

> > most part. It seems right now as if those kids with DS who are able to live

> > on

> > their own, get married, go to college, drive cars, and speak at conventions

> > are

> > all breaking news. That's the face of DS that most parents want to believe

> > in

> > and to popularize.

> >

> > A true dilemma. Great topic tho.

> > Sherry

> > who has to go tend to her 21 yo " adult " with DS-Aut

> >

> > Sara and Sherry both bring up good points about this video. But I still

> > think it's a valid video to make some points to those on the outside who

> > don't

> > have a clue.

> >

> > 1) Divorce is high among autistic families. Notice that among the 3

> > children,

> > only one is seen with a father. This does not mean that the other mothers

> > are

> > divorced, but the implied lack of a spouse is conspicuous. This is both

> > emotionally and economically devastating to the mother, who typically is

> > the one

> >

> > left to care for the child. The point is that they are communicating to

> > outsiders how hard autism is to a marriage. The challenge is balancing the

> > care

> > of our child with the needs of our marriage. It is difficult.

> >

> > 2) Autism is expensive. Just in the last year, we have replaced almost

> > $4000

> > worth of merchandise my son has destroyed (including a 6 week old $2600

> > plasma

> > television at the grandparents house). We can spend a lot of money on

> > therapies

> > and support. But Sara's point is accurate, we do not have to spend

> > ourselves

> > into debt. The focus should be on our child, but just like other children,

> > they

> > primarily need a parent, love, and support. They don't need the whole

> > " Abilitations " catalogue at home. It is often guilt that drives us to find

> > " the

> > best " for our child, when often " good enough " is what they need. I know, I

> > have

> > been guilty of this myself. The challenge is finding that balance of what

> > is

> > appropriate. That is where I think the value of this list serve comes in.

> >

> > 3) Autism alienates. I think this video properly shows the difficulties we

> > have in trying to take our children out in public or attempting to have

> > social

> > life of our own. If anything, it is somewhat restrained. My wife and I are

> > very grateful at this time to have an excellent respite provider who treats

> > our

> > child as a grandchild. Without this type of support, life is much harder.

> > Those on the outside almost always don't have a clue.

> >

> > 4) Autism causes a deep hurt in our souls. I think this is reflected in

> > Sherry's comments below with what happened within the Autism community with

> > this

> >

> > video. It does promote a stereotype that not all of our kids fit. But it is

> >

> > amazing how often it rings true. It reminds me of a mailing I got this week

> >

> > from the Down Syndrome of Louisville wanting to raise funds. They are

> > building

> > what they claim is the ONLY Lifelong Learning Center for those with Down

> > syndrome in the United States. It's a very impressive building on their web

> >

> > site: www.downsyndromeoflouisville.org My initial reaction was pain. We

> > have

> > not been to a DS function in 6 years, since my son started having meltdowns

> > at

> > these. It's just too painful trying not to compare him with children who

> > simply

> > have DS. I can still remember leaving an " enrichment " activity in the

> > summer,

> > sobbing, realizing my son was different. I admit that I still harbor

> > resentment

> > that my son can not just have " DS " . I am not overtly bitter, it's just

> > true.

> > But as I have mentioned in previous posts, I accept that this is my lot in

> > life

> > and go on. I am learning to be content. This is the " healing " we need as

> > parents of children with disabilities. It's a process.

> >

> > But then that reminded me that 7-10% of kids with DS have an autism

> > spectrum diagnosis. Would DS of Louisville cater to our crowd? Does anyone

> > with the DS community cater to our crowd? Or are we left alone to find

> > solace

> > on this list serve? Are we down syndromes " dirty secret " , or can we step up

> > to

> > plate and be part of the wider DS community? These are challenges that I am

> > now

> > mulling over...

> >

> > Just food for thought.

> >

> > Shane Avery

> > father of , age 11

> >

> >