Autism is a life-long disability. I've been thinking about this a lot this week. I even mentioned it while sitting with another Spectrum Mom at Ciaran's school and we had similar thoughts. I have real problems with the fact that Autism is a life-long disability. You see, I'm not even comfortable with it being a just-for-now disability.
I have mixed feelings about Autism, which might sound a little kooky (but then, if you've been reading this blog for long, you know I'm a little kooky and have my own ways of seeing things). It's just that Autism has taught us so much, and it seems to me so much a part of who my ASD kids are, that I can't hate it entirely. My boys are so interesting. Generally I see my job as getting to where they are, and leading them out to where the rest of us are. But when I get in and really start to see the world from their point of view, it's pretty incredible. It's a world of wonder, where you could get caught up in how a wheel turns and stay there for hours. At the same time, Autism has also turned our family upside down in a lot of ways, and it means that my children will have to struggle. I don't think any parent wants their children to struggle, not when there is already so much struggle inherent in life in general.
If my children do have to struggle, I want there to be a finish line, a place where the train stops and they're allowed to get off. I want there to be a time when the training wheels come off the bike, and they can just ride free and easy. But Autism isn't like that. It's a life long neurological disorder. And when that really settles in, when I really think about it, it's overwhelming.
Like many other parents, I try to hold on to the good. I find a lot of hope in our sons' prognoses. Mostly, though, I just keep plugging along. After all, I can't deal with forever today. I can only deal with right now. And right now my kids are here, they're healthy, and they're with me. And for that, I'm grateful.
i so relate to this post. my 6 year old son was diagnosed in october of last year, and i often find myself thinking that his ASD isn't a disorder, per se, more a part of who he is. and he is awesome! but it is a struggle as you said to get to where he is and lead him where the rest of us are. when he was small and i didn't really KNOW him, and i couldn't seem to reach him like i was able to reach my older boys, i felt angry and confused sometimes. now i am profoundly grateful for him and all the JOY he brings into my life.
ReplyDeletethank you for sharing these thoughts today.
Wow. No more words than - what a powerful blog post that was.
ReplyDeleteLigmom, I always felt like I really knew both Reagan and Ciaran. But after their diagnoses I found myself questioning how much of that was really them, and how much of that was Autism? That was hard. I still don't know. So I just take them as a package deal and try to love all of it.
ReplyDeleteLynn, thank you.