xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Things (about autism) that make you go hmmmmmm

Tuesday, July 20, 2010

Things (about autism) that make you go hmmmmmm

There are a lot of things you can imagine about what it's like to have a kid with autism; how hard it is, for one. The worry, the heartbreak, all that goddamn work you have to do; but what's always been interesting to me are the things that you just wouldn't expect, or you wouldn't have guessed, unless you had me (or one of my sistahs) to explain it to you. Here are some things I've been pondering lately.

The first and most notable thing about it is that autism forces you not only to change your expectations about what you thought parenting was, but also that sometimes you just have to go against what your instincts tell you. At least at first, while you're learning, but I'll get to the rest of my point later. My instinct as a parent is to let my children be whomever they are and not try to force them into something that I would prefer they be. Unfortunately, the whole theory around "treating" autism (at least the one we've chosen and have seen success with) is that you MUST force them to do things they don't want to do. Make them look at you; make them talk to you; make them talk to other people, etc. I've always really struggled with this because it's just so the opposite of what I think I should be doing. Not only that, but at every step along the way I've questioned myself. "Is this right? Should I be doing this? Should I be making him do this? It feels wrong, are you sure this is right?" and, as I've said before, since science has failed us, the autie parents, we just have to go along with whatever it is we're doing and just hope for the best. Shut up and keep swimming, as a very wise friend once said.

But eventually you learn that autism is in charge and you are not, and you learn that the choices you might make, which you think are best, may be what you would prefer but are not always what is best for HIM. I've learned this the hard way a number of times, and it's only by really studying him and his needs that I've been able to figure out what to do in each particular case; I have to remind myself that what I want and what's best for him aren't necessarily the same thing, and since I'm not in charge, autism is, it's almost like a risk/benefit analysis. If I make this choice that might benefit me, will the fallout be worse than the reward?

Another thing that I find interesting is that since Child 1 was, as his name suggests, my first child, I learned how to parent by parenting an autistic child, so by the time Child 2 came around, all I knew was how to parent an autistic child and typical children were totally foreign to me. They do all these strange things like talk to other people and have friends and when they cry they can tell you why. How weird is that?! With the second one I'm actually able to trust the instincts that tell me he should be free to be who he is, but I've now conditioned myself (with trials. HA HA! a little ABA humor) to believe that that's not the way to do it, so now I don't know WHAT the fuck to do. I'm constantly flying by the seat of my pants (what a great expression; I don't even really know what it means but I love it) and I think I might be doing it all wrong half the time, but as long as they don't cry, I consider myself a success. Or, wait, is that how it works? Or is it that it's ONLY if they cry you're doing it right. I have no fucking idea. Do you?

The last thing, and the one that I've always found most ironic, is that my child with autism has always been so much easier to parent than my NT child. The autistic one is quiet and withdraws and shuts down when he's stressed (for the most part) and the other one gets all loud and shout-y. Of course, that's a symptom of his disability, but how funny is that? Plus, he's also the sweetest, kindest person in the world, so that helps. Not that the other one isn't sweet and kind, he's just, um... more like me, i.e. louder about it.

So, bottom line, I have no idea what I'm talking about and have been typing this for about 45 minutes now and I don't even remember what my point was in the first place.

Hey, look! A bear!


Anonymous said...

you're a wonderful mother !

Unknown said...

Thanks Mom :)

Anonymous said...

you ARE wonderful! Keep up the good work. Nobody teaches us how to deal with these things, and you are doing AMAZING, and keeping your sense of humor. How good is that???

Anonymous said...

What an awesome post. I so understand what you're saying, and I think it's worth saying. I did a post on this sort of topic a little while back ( http://autismandoughtisms.wordpress.com/2011/02/11/refined-better-or-different-parenting/ ) which covers some of the same ground. I wish I'd read your post first, it would helped clarify, explain (and support) some of what I was trying to say there.

Unknown said...

Even the bear? ;)

Anonymous said...

Especially the bear :p

The bear made me smile. Smiling is good.

SherilinR said...

hi jill. i just stumbled onto this link as i was reading your post from tonight & i wanted to say that i totally get where you're coming from on much of this. my daughter has aspergers and so much of what i deal with daily (during the school year anyway) is totally different than what i ever would have imagined as my parenting life. when i dreamed of my future daughter, i imagined us sharing interests & painting nails & doing fashion and cuddling. those things never came to be. shallow, but sad.

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