Wednesday, October 04, 2006

The Monster in the Room

A big part of the reason the blog My Beloved Monster & Me speaks to me the way it does (get it? Speaks to me? Arrrgh- Oh, the gross unfairness of it all, but YES, Schuyler's story speaks to me) is because of the Monster metaphor employed.

We are now in the middle of all kinds of specialist's appointments, and trying valiantly to be both proactive and to ignore the big question mark that hangs over Compaito's future like a dark cloud.

During the year that he was about 18 mos to about 2 1/2, he had pretty much constant ear infections. What we didn't realize at the time was the degree to which that affected his hearing, and potentially, his ability to process language.

During the time when I first started to notice the delay (nagging feelings, having to make a list of the words he knew and only coming up with about 50, only 10 of which were intelligible by anyone other than myself) I tried valiantly to justify it. We speak two languages, everyone knows bilingual kids pick up language slower in the initial phase. After his "glue ear" was diagnosed and tubes put in, it was the hearing loss. He would catch up right away, because he is smart (and he IS, dammit). And yet... he didn't catch up right away. Slowly, gently, everyone from doctors to teachers to family friends affirmed my concerns that things weren't going as they should. His drooling was brought up.
And his vocabulary. And his behaviour.

And so I tried to be a "good mama." I read "Like Sound Through Water", until 4 am one day. I consulted Dr. Google endlessly, inputting a varying combination of symptoms, hoping to unlock the mystery of my little boy. Slowly, I got him in to see specialists. Sometimes I cried at those meetings or appointments. Usually that got him back to see someone faster, but it was humilliating. I have never felt so desperate, or so powerless.

During all this time, many things were suggested or implied. Some folks thought Compaito had ADHD. But I have worked with kids who genuinely have ADHD, and he's not one of them- he can be hyper, sure, but he isn't consistently hyper. I scrutinized, analyzed, tried to figure out how much of his behaviour was neurological (if any), how much of it was just plain three year old boy, and how much of it was a small human being not understanding or using language, and unable to make sense of his world. I wondered if we had missed that all-important "window" after which it is said to be next to impossible to teach the grammar, the structure of language.

I asked for reports, and tests, and analyses. One came back with cognitive issues flagged as a concern. I was furious. My son couldn't talk, but damn it all, he was NOT cognitively impaired. And yet... he lived entirely in the present. It was impossible to talk to him of anything involving the past or future, because his eyes would light up or cloud over, depending on the subject matter. Everything was so immediate. Everything I had dreamed for him got called into question. I wondered not only if he could attend French Immersion, but whether he would be ready for school at all at five and a half. I withdrew into myself. I cried a lot. I read a lot. And one of the things I read was Schuyler's Monster. Schuyler gave me hope. She met, and mastered, her big box of words. And she learned how to spell. And she bravely howled against injustice. And dyed her hair pink.
Compaito's monster is somewhere in the room. It's particularly scary, because we can't see it (maybe hiding in the closet, or under the bed), and because we can't see it, I ride a rollercoaster of hopes (that his monster isn't real) and fears (that his monster is scaryer than anything we could imagine).

We do know that he has come a long way in comprehension. He went from testing below the charts to testing at the 49th percentile for his age (which feels like he is a goddamn genius to me). His spoken language is all over the place. Which is why, when he says something completely rational and well-formed, like suggesting that the monster eat his supper, it's more than a kid saying something cute: it's a bloody triumph worthy of fanfare and encouragement.

Which is why, when I stopped laughing, I told him: Great idea, Compaito. Do you think the monster might like some ketchup?

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