Measuring up and down

Jonah goes through phases, so it’s next to impossible to answer the question, “How’s he doing?”

His behaviors shift. His anxiety ramps up or settles down. What he needs in response to these changes (be they internal or external) can be hard to figure. Sometimes it’s the swing or a long walk. Sometimes he needs something rubbery to chew. Sometimes the iPad–other times definitely Not the iPad. A tumble on the crash pit. The welcome routine of summer morning camp (aka ESY), or a break from that very routine. To watch that one scene in Star Wars or Monsters Inc. or Wall-E or Winnie the Pooh for the bizillionth time. But not for the bizillionth-and-one time, because that will ramp him up even more.

All of his therapists agree: it’s a puzzle. It’s trial-and-error. The only sure thing is he does need something. The kid’s got it in him to learn just about whatever he wants to learn, but together we have to help him find a way to get his body into a space where he can learn.

So when the insurance company responds to the OT’s request for another 20 sessions with something to the effect of “four should be sufficient,” it makes you wonder just what exactly they think autism is. The OT hasn’t changed her story. She’s submitted the same report with the same diagnosis at least five times now. She’s requested the same number of sessions because Jonah needs the same amount of assistance.

I draw two rather antithetical conclusions from the insurance company’s response: 1) they think autism can be cured; or 2) they think there’s only so much that can be done. Which is to say, after a certain point J become something of a lost cause. The reality of a life-long disability doesn’t seem to be on their radar, especially when that disability is largely invisible to most people—certainly to the powers that be who have never met my son or spent five minutes with him during a therapy session or in our home.

No matter how you pose the question, it’s certainly a matter of money. With autism rates at an all time high, insurance companies must be implementing strategies to keep costs in check. What knowledge those strategies are based on is something of a mystery.

So we’ll appeal their decision, but the question still looms: what, if any of this, is actually working?

Take for instance: Gabriel tumbles, slams his head into a wall (not an uncommon occurrence) or face plants on concrete as a result of his head forward, chest out, arms dangling to sides full out running form (see Pocoyo for an accurate illustration). Jonah will yell out, “Gabriel hurt himself!” Sometimes. But I don’t know that I’ve seen him once go to G and express any kind of personal concern or comfort. It’s not that Jonah doesn’t feel. He feels everything. It’s just hard to see or say where that feeling goes sometimes. What it’s doing in his head and soul.

John and I often say, not-so-tongue-in-cheek, “Well, the world revolves around Jonah.” I don’t know if that’s true, but it’s a pretty fair representation of the way things appear. Take the Lego Club social skills group he’s been attending for three weeks. J’s still building narrow towering structures—the only kind of thing he’s ever built with blocks. Socially, he’ll respond to his fellow builders if prompted, or if what he thinks they’re talking about is remotely interesting to him. Usually though, he turns the conversation (which still seems mostly like a monologue) back to his current interest (“Why is Monsters Inc. a story about doors?”). I’m all for the exposure to other kids on the spectrum—he doesn’t get much of that—and to anything that helps J recognize and express his feelings, but how changeable is J’s brain?

The idea of brain plasticity is fascinating to me, but as Jonah grows older, I see him becoming less flexible, if anything. As we pull into the strip mall where his social skills group meets, J always asks, “Why do I have to go to Lego Club?” It’s a legitimate question; one to which I don’t have a good answer. He partially asks it to get an answer, but he mostly asks because that’s just what he does when we pull into the strip mall where his social skills group meets. It’s a way to order where we’re going, a way to manage the excitement and anxiety (I think).

But what do I know? Sometimes more, sometimes less than the “professionals” with years of experience. What I do know: Jonah. And Jonah knows things no one else would even think to know. The way he expresses them is a constant wonder and particular talent.

John: What are you doing?
(as J drops the measuring tape from the top bunk bed)

Jonah: I’m measuring up and down. That’s just what life is.

School uniform shopping

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