xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: This is what I hate about autism

Wednesday, March 2, 2011

This is what I hate about autism

Well, actually, there are a lot of things that I hate about autism, but many of them are things that I find unfair in the general sense and don't necessarily impact our lives (did you read yesterday's Dive Bar post? That's a good example) THIS is what I hate about autism and how it effects my child and our house.

I picked the boys up from school today and Child 1 wasn't talking. This isn't necessarily unusual, but I just had a feeling that something was up. I asked him, in the car, how he was and he just shook his head. Child 2, also, asked him how he was, but was much pushier about it than I was (that's what he does, you see).

"Bart, are you okay?"


"How was your day today?"


"Because you look sad."


"Now you're making me sad..."

We got home, got ourselves situated, and I sat down in front of him and asked again, with eye contact this time. "Are you okay?" I said. He just shook his head again. "How was your day today?" I asked. He said "I guess my day was okay" and then he put his head down on his hands which were on the desk in front of him.

I waited, and then asked again. "Tell me what happened today."

"Can you please go away now?" he asked. This was my indicator that question time was over. At least I got "an okay day" out of him, rather than just the usual "good."

So, I have no idea. And I likely never will know. And it's not because he doesn't want to talk about it, or I'm being too pushy about it, or whatever other reason you could think of; it's because he can't tell me. He doesn't have the expressive language skills to take what's in his head and put it into words, and instead of trying, he just tells me to go away. And I don't push him because I don't want to, but also I know that it will be a futile effort.

So, he spent the rest of the day being incredibly frustrated and sad about things, and I never found out why. So, fuck you, autism.

And now, if you'll excuse me, I have a tangent to go off on.....

We had an IEP meeting yesterday. Three fucking hours. I'm always so amazed at how many people are involved in the education of this one little boy; there were seven of us in there. All women, of course; have you ever seen a man in any of these things? Unless his dad was there, maybe; although last year his teacher was a man. It sure would be nice to get more men in his life. But I digress..... I'm also always so amazed at how much fucking paperwork is involved in the education of this one little boy. Everybody has a report, and there are multiple copies of each one; paper everywhere! And I've been given so many fucking copies of those Parents Rights now it's just become annoying. I know it's a necessary formality, but still. Save your paper, man; give them to somebody who doesn't already know their rights.

Anyway, much of the meeting was spent in discussing his "academic weaknesses," of which there are many, but in particular, his terrible, horrible, no good, really bad reading comprehension. He can read every word perfectly! But ask him what he just read and he has no clue. I explained that this isn't because he didn't understand what he just read, it's because he's unable to pull the words out of his head and give them to you. It's the exact same thing that makes him unable to tell me what happened in his day that makes him sad. It's not that he doesn't know, it's that he can't say it.

These guys have it covered, though. I'm very impressed at our team this year, I've mentioned it here before. These guys are totally on top of this shit, they're motivated, they care, they're interested and best of all they all know him. They're not just guessing about how one might go about educating a child with autism, they actually know him and know him well and are able to "modify the curriculum," as they say, so that his Education Plan is actually Individualized. Have I mentioned how impressed I am? It's pretty rare to not only not have to kick and fight and scream for every minute of services, but to have a team that is so on top of things, and so good, and so caring, it's really, really awesome.

I had a lot more to say but it's been a long day and I've run out of steam.  Maybe I'll return tomorrow to finish this. Or, maybe I won't.

Thanks for stopping by! *wave*