Wednesday, September 22, 2010

Growing up With Autism

This week an article from The Atlantic has been circulating through the autism blogger world. It's about the very first child ever diagnosed with autism, Donald T. And where he is today.

That's a subject that I like to pretend doesn't exist.

In fact I clearly remember the very first time I ever thought of Brian as being an adult with autism. It was a full year after his diagnosis and I was busy at work with my father. That summer I had been helping him with his care-taking business by mowing with him on the weekends. We were at this wonderful location right on a cliff high above the ocean. It was smoldering out and we had stopped to take a break. He asked me if I had thought about steps to take to ensure Brian had financial security when he was older and what the options were for his living arrangements. I just remember feeling like I couldn't breathe and my heart paused for a minute. It was the first time it ever occurred to me that I may not be able to "cure" Brian. Until that point I was 100 percent positive that all of my hard work was going to make it so he would have a fully-functioning adult life. He would just be a little quirky but otherwise totally "normal".

Two summers ago the whole theme of our annual Autism Family Retreat Weekend was "Adults with Autism". It was another wake up call for me as I learned about living options in Maine, the adult transition, and special-needs trusts.

As we just passed our four year "anniversary" of the diagnosis I am getting more and more comfortable with the idea that he is going to be an adult with autism. I can't stop it from happening. And I'm going to prepare for that.

Back to the article that spurred this train of thought- Donald's success seemed to come from the fact that he seems to be quite high-functioning (eh- not so for us), a mother who would do anything for him (check!), a supportive community (check!), and the fact that his family was loaded (ummm....yeah, we're screwed on that one). So we've got some of those qualities, so I will hold on to some hope for Brian's future as an adult with autism.


Christina said...

I have no doubt that Brian will have a great life due the determination of his Momma!

Lynn said...

Whenever I see places that hire the the guy wiping down equipment at my gym, or the guys wiping tables at fast food places (lots of wiping), I literally start hyperventilating and have to leave. I have to get a handle on this, but I feel that I'm doing the most important thing, which is giving her all of the therapy and support that I can right NOW.