“And lastly, When can we all get on the same page about autism? Is there a person alive who doesn’t believe all human beings ought to have as many opportunities for learning as possible in order to provide choice? Because as far as I can see, having autism is an ability and a disability, both.”
I just read the above in one of Kyra’s posts at This Mom. It really resonates with me, especially today after John’s IEP meeting.
When we submitted our parent report, the only request we made was that he be assessed for augmentative communication. That’s it. John has come so far this last year with his expressive language, but he could go so much further. It is true that he now knows a lot of words — like red and apple and circle. When prompted, he can clearly identify most objects (animals, parts of a face, Sesame Street characters).
But if he is not feeling well, he can’t tell me what hurts. If he’s lost a favorite block, the one with the “8” and the “zebra” on it (not the one with the “3” and the “sailboat”), then he can’t do very much other than yell “Eight!” and maybe “Zebra!” after I’ve looked under every couch and chair — which may or may not cue me in to the fact we’re looking for the block.
He can’t tell me how his day was or what he did. He cannot answer yes or no questions or tell me he’s tired of macaroni and cheese. What is wrong with trying to find ways to help expand his ability to communicate with those around him?
Well, according to some, John is able to say words when he wants to (not really true) and Those devices are for kids who can’t form words (which he often physically can’t) and He doesn’t need a box to say the words for him because he is able, (not all the time, and not clearly) and You would have to record so many words and phrases into it, you wouldn’t want to do that.
But I would. I would gladly do that if it would help him, even once, tell me that he can’t sleep because he had a nightmare. Or that the reason he always stacks the five block on top of the two block is that the two numbers are oddly fat and squat together (I’ve looked!) and he likes that — never mind why eights are suddenly so important. I want to give him the opportunity to share his thoughts, if he wants to, and to have the tools to ask for things he needs — he deserves that.
It is true I am not completely selfless in wanting this — I want to talk with my son, to know him even better than I already do. And I say this recognizing that we may never have a conversation like that, but do we really not try?
I know he is four. I know the future is out there, unwritten. I know that we are leaving this school, this team, behind us as we enter kindergarten — a whole new world of possibilities. But on the heels of Sam’s IEP, which was positively glowing with thoughtful consideration given to his challenges and learning style, well… it feels like not so much is expected from John. It’s really hard to sit here after the fact and know that I didn’t stand up and champion my son to a room full of people who have, it seems to me, pigeonholed him. It was never said outright, but it permeated the room — He’s pretty autistic, why expend our time in assessing him for a device that probably won’t help him and we’d rather not pay for?
It seems to me that professionals who spend their days working with children with autism should know that there is so much more underneath the surface, so many layers to be peeled that deserve expression.
“Having autism is an ability and a disability, both.” I am quite certain that John’s disability masks countless abilities waiting to be discovered.