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Country: USA
Member since: Oct 23, 2007
Last logged in: Nov 20, 2008
Hi everyone
My name is Jan and I am Mom to my wonderful son, 22 year old Andrew who has regressive autism that is fairly classic in it's presentation, (the result of his MMR vaccine at 16 months.) He also has bipolar disorder and tourettes syndrome.
I also have a wonderful (NT) daughter Allie who is 25 and working on hers Masters Degree in Fine Arts.
I work for an Autism agency and spend the rest of my time advocating for my son. I am trying to get the people in power in the adult service world to understand what "Best Practices" are for people with Autism.
I have been married for 26 years to my DH who is a sweetie and very content to let me do the "autism stuff."
Andrew has just transitioned from school to adult services, a very disheartening event! Adult Services knowledge about people with Autism and their needs is generally where the school system's knowledge was back in 1993!!
I am really hoping to be able to corespond with other parents of young adults with Autism who are also strong advocates for their sons and daughters. This is a tough enough road to travel, without having to do it without being able to share ideas with others who are also facing the similar issues.
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janneane7's Compositions
by janneane7 on 01.16.08 - public - 110 visits
Ahhhh the "R" word... well up until a few years ago I belived recovery was a crock. I believed that kids who "recovered" never had autism to being with.
Then I went to a DAN conference out in California where I saw video of young children, some who I would consider to have fairly severe autism. Next I saw these same children who were now a few years older come out and talk to the audience. All of them had lost their diagnosis of autism.
I was stunned at the change in these children and at that point I had been living with autism for 15 years and had been working in the field of autism for about 9 years.
I HAD believed in biomedical interventions for a few years by then, but only as a means to help children improve, not recover.
I changed that weekend.
On the other hand I also belive that Andy will never recover. I belive that the brian damage that occured as a reuslt of an autoimmune reaction to his MMR vaccine at age 16 months cannot be changed.
I also truly belive, from everything I have learned about autism, that if the interventions available today had been available for Andrew when he was two, three and four years old, he would either have high functioning autism (good language and cognitive/academic skills) or no autism at all.
I also used to believe so strongly that it was OK that Andy had autism. That he was a wonderful delightful and fine child just as he was.
I still believe he is wonderful and delightful and even more... but if I could cure him I would in a heart beat. The suffering he has gone through, (abuse at the hands of teachers, not being able to tell me what he thinks and feels, being embarassed by behavior he cannot always control, etc...) the things he has been cheated out of in life, (camp, school sports teams, dates, proms,oh my God too many things to even mention...) make my heart ache like nothing else I have ever experienced.
But, I also completely understand why some people with autism and Aspergers love being who they are and hate the thought of a cure. I am happy for them and glad they can have lives they love.
But for me, if he could recover, if he could communicate with me the way his sister and cousins do, if he could live even close to a noraml life, without having to have 24 hour support until the day he dies, I would be thrilled beyond measure.
But I seriously doubt that this can happen for him in my lifetime or in his because the damage was done too long ago.
That isn't to say that I won't keep up to date on the latest treatments or keep on looking and learning about biomedical treatments. (To me these are far and away the best course for the vast majority of children being diagnosed today!)
To do any less would be giving up. And I don't give up.
Comments(4)
4muskateers
Posted on Wed, 16 Jan 2008
Hi, by chance did you go to the DAN conference in Long Beach when Lou Diamond-Phillips walked out on stage and the presents the children in the video we had be shown. This was the time the govenator sent someone to show us he had signed the proposal. This conference was in 2004 then they went upo north and to the middle and came back to CA. in Oct. of 2007.
shannonj
Posted on Wed, 16 Jan 2008
Yes-- There are so many more advances in treatment and understanding than even when my 12 year old was diagnosed. We did the best we could at the time, and just hope that one day, no child will have to face the same struggles....
carmel66
Posted on Wed, 16 Jan 2008
Thanks, Jan. Many folks who are Little People (LP) don't like the idea of being 'cured' of their dwarfism (limb lengthening, drugs being developed, prenatal testing). They recoil when they hear a parent who is average height tell of how 'devastated' they were when they found out their child was a dwarf. We always figured we would leave "recovery" from dwarfism up to our son when he was older. Never did we think (in our nice little protected bubble) we'd have to consider recovery from something that was actually more devastating. Thank goodness the internet has made the information needed to attempt recovery available. Because the the ARI website was not one of the one's listed in the BROCHURE I was handed by the doc telling me of my son's probable diagnosis.
