Lately John’s reactions to minutiae have been extreme: he’ll suddenly stand up and scream at the top of his lungs. Frustration born of not finding the words quick enough I imagine, which doesn’t make it any easier — only understandable for those of us with the Autism Manual. It is of little use to the public at large, including those inside our educational institutions — but at least most people look at John and see his disability. His is evident.
But my Sam often passes for typical. Often. Which means when he acts atypical people are all what the hell? I’ve been guilty-guilty-guilty of this more times than I care to admit. We expect so much more from him, so much more than we do from his brother. When Sam’s reaction to a timeout for speaking out in class is explosive screams and a mad dash around the room, some are quick to categorize him as a “bad child.”
Sam spends all of his free time reading the encyclopedia for fun — he is all “nano-technology this” and “Cambrian period that” complete with helpful and constant pencil drawings. So we signed him up for this after-school science program. His brain is in need of stimulation that an after-school science program would seem to provide. The weekly topics and experiments scream SAM.
So when John and I arrive to pick him up — after first negotiating the parking lot and John’s screams because I was unable to complete a crocheted Mars before we had to leave (yes, a crocheted Mars) — after negotiating screams and flailing limbs as we walk down the hallway because, I don’t know, I chose the wrong route? or maybe he was still upset about Mars and needed to scream some more about it? After all that, we arrive to the classroom and I see my boy huddled in a chair backwards, snot falling down his face, eyes red and still wet with tears. He sobs when he sees me. The instructor motions that he’d like to speak with me… “He was very rude,” he says “he talks a lot —a lot!” he adds with exasperation “and he doesn’t listen. It seems he can’t hear when he’s spoken to.”
He was in a timeout for nearly an hour. An hour!
Huh. So you see, I’ve forgotten. I’ve forgotten how well my boy copes, how often he passes for typical. I’ve forgotten to relay strategies to this young and inexperienced instructor. Once again I am taken by surprise that yep, my boy still has significant challenges! still enough to knock me over. I try to explain now Do you know what an IEP is? You do? Great, He has an IEP that is supposed to address some of his challenges. He really loves science, it may be helpful to give him a warning or two about speaking out before putting him in a time-out. Just makes it worse, I promise!
This is the third session and the third time Sam has been miserable when I’ve picked him up. This last time is, of course, the worst. The program is not run by the school system but by an outside organization, so I don’t think I can ask for accommodations — or can I? I’ve contacted his team and am hoping for the best. He is desperate to continue. The instructor is glad to hear some things that might help but does not sound overly confident that he can handle it.
So there are these times? Times I just feel outside myself. Sometimes I think it may be the gaping stares from others that hurls me out of my body, a spectator to my life, to the situation. When John body-drops to the ground, my limbs feel leaden and uncooperative in the exact same way that his refuse to budge and part of me is above looking down at the ridiculousness of it all.
But Sam needs for me to be different.