Thursday, January 14, 2010

thus spake the OT (part two)

The Toddles, deprived of a rather tidily built foil, is now exercising quasi-homicidal tendencies on some hapless bananas. While I'm rethinking the chances of banana bread, the Eldest is muttering about not having to do some bit of homework that he will, in fact, have to do.

While a peaceful moment staggers unconvincingly through our home, maybe I can start getting this post down on, well, electrons.

[the Eldest begins to wail something about there not being any math homework, there never is any math homework. A pause is offered by all parties, followed by some truly offensive parental logic. But I don't have my homework folder - I didn't bring it home - I NEVER bring it hoooooome. More parental logic is about to follow, and any guesses at the register of the italics coming thereafter? Right.]

So, (getting the post down ignoring whatever that was that went clunk, the small, fascinated voice saying, oh.) it begins with paperwork.

I happen to be fascinated by the paperwork that I'm given by medical types. As I fill it out, I play a mental game, trying to guess what the medico would think if I said yes to question 5, or frequently to question 12. This mingles gently with my awareness that I really want the doctor to like me. To think I'm sensible, possibly trustworthy. It's something I'm a bit embarrassed about (what if the cool kids don't like me?), but I'm pragmatic: a good relationship works better. When doctors treat me like a semi-sensible, primarily reasonable person who likes multisyllabic words, I am a better patient, and the relationship produces better medicine.

The paperwork isn't really an opening salvo, it's more of a formality. The real relationship building happens when the doctor walks into the room, I think - the paperwork just seems to set a stage. Gives me a chance to rehearse a little. Gives them (assuming they have time to read it) a warning about what's sitting in the room. But while medical questionnaires seem to ask largely verifiable, historical questions, therapists' paperwork seems more, oh, fluid in the kinds of information sought. Skewing them is, I suspect, much easier.

Ever so gently, I could hint that my child is very anxious - but maybe only tells me about it. That he melts down under circumstances that the OT might never see, could approximate but not reproduce. Maybe he had a bad day when you saw him, I could say. Maybe he had a very good day. Looking at the paperwork, I began to suspect that I had an alarming amount of influence in this relationship, that I had a frightening ability to talk/write/explain my kid's way into a diagnosis.

But it didn't occur to me that the tables were about to be turned.

I started answering questions, threading my way through precision and my own uncertainties. But the questions, simple as they were, started hammering at me. What are his sleeping habits? (don't ask) What are his eating habits? (when he can eat the food?enthusiastic. sometimes.) Does he like to run? (god, yes) get messy? (sometimes) dangle upside down from the monkey bars? (never, except when he does) Does he like/love/snore through/hate fireworks? (hate) the flushing of public toilets? (winces) Does he wiggle? (yes) fiddle? (yes) droop? (yes) what was toilet training like? (for me or for him?) The questions went on and on, and by the time I was done, everything seemed pathological.

What does it mean that the kid can't sleep in one bed? That he rolls around at night, is impossible to sleep with because he rubs his feet on my shins, needs to have another body (thankfully, his brother's) wrapped around him? Should I worry about that? What about his anti-firework stance? the bursting into tears during the shofar blasts on Rosh Hashana? I hadn't worried this much since I was a new parent, and frankly, I hadn't missed the experience much.

My sense of what was okay, or workable, was slipping away - overshadowed by what was Capital N Normal.

Of course, I said so out loud. And the OT nodded, agreeing. I asked her how she could make a judgement, based on an hour and a half of playing with the kid, a brain-tangling set of questionnaires, and she smiled wryly. With the clear cases, she said, there's no problem. But with the more borderline cases, it can be tricky. But that's why we follow up with more questions, if we have any. Oh. Your son is bright, and he's learned ways to cope with his bleeding disorder and allergies, which is good, because he could apply those methods to other challenges. But it also means that he's smart enough to know what answers to give, and that can make it harder to figure out what's going on. Oh. I echoed her, thinking it over. He's got enough experience with doctors to know what answers they want to hear. Right, she told me. We see a lot of kids like that. Ah. Experience with mothers like that, too.

Just in case, I handed her some questionnaires that the Man had filled out (for the uber-OT folks, who were also uber-not covered by insurance, and uber-didn't care), to offer a different perspective. More data, I said, and watched her smile manage to balance appreciation with a gentle tolerance for the overeducated, meddling parent.

And a month later, we had her report. Based on reporting by parents and observation by OT, the Eldest has a sensory imbalance in regards to motion and contact, both being under-sensitized. Therapies are recommended, roughly 8 or more visits to assist the Eldest in learning self-regulation techniques. And then there was a bibliography, including something about engines and how they run - a concept soon to be enthusiastically despised in our house.

I sat down, landing on some of the evaluation papers, feeling unexpectedly gut-punched. I'd walked into this mess, eyes open - or so I'd thought - but somehow, I'd managed to keep the rosy lenses in. This, I'd told the learning guru, is not what I'd expected you to say. It wasn't what I'd expected the OT to say, either. I thought about it, about the kid who hates crowds, and spent years hiding upstairs during his own (small) birthday parties. The kid whose shrieks of laughter seem to be higher, shriller than his friends, whose joys will inevitably be higher, and his challenges probably harder. Did this label fit him? I looked at the Eldest's binky-sucking, ancient sweatshirt rubbing, loud noise-hating brother, and mentally filled out his paperwork. Oh. Did this label fit him, too?

Could we trade the label in for an explanatory paragraph? I heard my father's voice, warning about medicalizing what could otherwise be an ordinary, messy life.

Watching the Eldest wriggle, pop out of his seat, and run, I wasn't sure. I can't stop, he told me, and ran down the hall. He flung himself into the air, bouncing off of a wall, and ran on, giggling - while something inside me quailed.

But still, does it fit? Cautiously, we accepted the diagnosis, and watched puzzle pieces fall into place. Until the kid himself staged a sit-in.

next post: the Eldest respondeth (part three)


persephone said...

I'm hesitant to comment mid-story, but here I go. You know, I think, that we just finished evaluating my son Bet for sensory issues too. I'm struggling - amid the shock of recommendations I didn't expect, feelings I didn't expect to have, and yes, the sense that all this is so easily skewed - to remember a couple of things.

One: that the word "normal" is even more fluid in this context than usual. Everybody, I am confident, has some of these sensory likes/dislikes. Everybody, I suspect, could benefit from a little sensory input of the right sort. The question is not whether he is normal or pathological or just quirky enough that the cookie-cutter world doesn't know how to handle him. The question is, given the way he is AND the way the world is, how hard is it for him to navigate through his daily life?

And two: that I know more about this, personally, than I'd realized before. Because Bet is his own quirky self, but he also - CLEARLY - inherited a good deal of this from me. And to some degree, it did get better by itself; I'm an adult now who knows what I hate and love and need and how, for the most part, to communicate or obtain those things. But oh, it was very rough when I was a child. Right through elementary school, I think. Years of crying about things other children took in stride, feeling fundamentally different, hanging back from what was supposed to be fun. I wish someone had said something to my parents, back then. I wish I'd had the chance to see what I might have been, done, enjoyed.

I don't know your Eldest. I don't know how much he's struggling to cope, vs. how much others are struggling to cope with him. Maybe he's perfectly happy. I have it easier with Bet, I think, because he is so obviously NOT happy. Don't get me wrong, it's still an effort to accept what we have to do for him. But I don't think I'll have any regrets. And knowing that, I'm actually happy to exploit the ease with which these evaluations can be skewed. I will say what I need to say, to make sure he gets the help I know he needs.

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