I attended Alex’s IEP and 3-year re-evaluation on Monday. By mutual consent, the meetings were combined and the material of the IEP represented most of the re-evaluation work, simply because nobody had any doubt that Alex still qualifies for special education services.
One good thing about the 3-year re-evaluation: When one of the therapists questioned why Alex wasn’t marked as qualifying for the special education services based on cognitive disabilities criteria, it wasn’t me who had to explain. The psychologist who was sitting in as part of the re-evaluation team provided the explanation, though he wasn’t a regular part of Alex’s education team.
His explanation was simple: We don’t know. Considering Alex’s sensory, communication and social delays and difficulties—all part of the autism criteria—we cannot effectively assess his cognitive disabilities; and, so we do not officially attach that label to Alex. All simple and straightforward.
The bad thing, of course, is that this had to be said. Again. Granted, the therapist in question is new to Alex. But the dominant assumption seems to be that because Alex is placed in a CD classroom he must have cognitive disabilities. We can assume—and many people choose to do so—that because Alex cannot effectively and consistently communicate that he knows how to do something, then he must not be able to do it. Of course, we know Alex knows his numbers 1 – 50, but because he cannot consistently prove those abilities through testing procedures, his teachers continue drilling him on them.
I almost wish we knew that Alex did have cognitive disabilities. First, there’s nothing particularly wrong with cognitive disabilities. You can still live a happy, productive life with cognitive disabilities. You can still be wholly and utterly a person with cognitive disabilities. It is a disability and does pose certain limits, and those limits do tend to put a ceiling on what you can do, but with enough effort from the support personnel and enough acceptance and accommodation, you can attain a pretty awesome quality of life. (I am not suggesting that’s the norm, but that it is possible.) On the other hand, not knowing is very difficult. Imagine being a twelve-year-old boy with a normal or above-average intelligence (distinctly possible since both his parents have above-average IQs), but being unable to express that intelligence in a way meaningful to others and to be drilled daily on the most rudimentary subjects like “What color is your shirt?” and “What comes after 32?”. If it were me, I’d be very frustrated, very agitated, and sometimes I’d get very angry.
I can, just barely, imagine Alex’s desire to break through that barrier—and the frustration and anger when he can’t. One thing about typical education strategies that always frustrated me was the rule that you say what you’re going to say, then you say it, and then you say what you’ve said. While teachers generally don’t follow this rigid public-speaking form, they repeat themselves a lot. As a child, I imagined how much more time I would have to play if they’d just say it once and leave it be. I didn’t need for them to repeat, repeat, repeat the same material over and over and over again. And I didn’t realize how important it was for the other students. It was frustrating. It was annoying. When I imagine myself as Alex with a normal intelligence, stuck in this repeat-a-thon for years, it makes me want to scream. It’s so pointless, so useless, and so very frustrating.
And Alex is frustrated. He does scream. He acts out in aggressive fashion. What if it’s not an inability to regulate his sensory system? What if it’s the combined frustration of being unable to communicate and being drilled with simple concepts day in and day out? What if his inability to regulate his sensory system is, in large part, a measure of his frustration in having knowledge that he cannot express and being drilled over and over on “meaningless” tasks?
I worry that this is exactly what Alex is going through, though I cannot prove it and I seem powerless to change it. Every time I try to nudge or push or shove the teachers into experimenting to see if Alex will find more difficult material more stimulating—I hit a brick wall, almost totally immovable.
So I hope and pray that the next year, the next school, the next attempt will bring about a break-through, either for Alex and his communication abilities or for me and my need to try to up the ante.
But for all my imaginings, the reality is that Alex’s sensory system is a mystery. We’ve tried just about everything any of us has ever come across and nothing can get him calm and keep him calm for more than a few seconds or a few minutes. Willy can go 0-60 with no apparent transition or cause. Ben can go 0-80. Alex goes from 0 to 150, and he has no in-between. He’s either asleep, at the edge of sensory overload, or over the cliff speeding for the crash at the bottom of the ravine.
My little guy faces so many barriers and we’ve tried so many things. And we’re stuck waiting…waiting…waiting for someone to figure out what we can do to help him.