The Stuff in the Space Between
February 11, 2014
Throughout all the hours with bouncy-voiced strangers, the weekly treks to various therapies, the years of classroom pull-outs and special accommodations, Noah never asked us why.
Not surprising at first, of course, since the majority of our early efforts centered around his reluctance to talk much at all. And even though he's never been the most flexible child, there was still always that element of understanding that We Took Him Places Sometimes, And So He Was At That Place, Okay, Cool.
Most of the places we took him were pretty fun, anyway, and full of grown-ups who played games with him the whole time. Best not to question it.
But now, the Matrix is glitching. School is not fun. School is hard. School is hard for him, in a way it doesn't seem to be for the other kids. The other kids, whom he still doesn't understand how to be friends with, or why he should even want to be friends with them, especially since they don't understand why it's so hard for him to stay calm and still at school, seem to have it easier.
And now he wants to know why.
And he doesn't just want to know why, in a reasoned conversation about IEP codes and re-evaluation years — the kind of conversation I've gotten pretty good at. He doesn't want to know during the times I've tried to initiate the conversation, using advice from books and therapists about talking to kids about special needs, when he's calm and regulated.
No, he asks when he's angry. When he's more like Sally Field in the cemetery, alternating between hollering whhhhyyyyyy at me and hurling insults at himself over a stupid homework worksheet. Stupid. Idiot. Bad. I'm no good at anything.
Words that aren't true, not even close, I have reams of paperwork and evaluations that say the exact opposite.
But they feel true to him. And all the paperwork and ability to hold my own in IEP meetings doesn't change that, nor have they necessarily prepared me for what to say to him in those moments.
I am tongue-tied in response to those angry, explosive tears and pointed questions. What's wrong with my brain?
I just want to hug him. I want to magically patch up his crumbling self-esteem with sheer will and love and magic. I want to make it all better.
But I also just want him to stop. I want him to listen to me. I want him to sit still for 10 freaking minutes and do his writing homework, because Jesus Christ, you'd have finished 20 minutes ago if you just focused and did it. I want to stop losing my patience with him, and...crap, I just want to stop blowing this, on the most basic, fundamental level.
And yet, in other moments, Noah can now perfectly articulate what life is like inside his skin. Sometimes he speaks in code — feeling "shy" about something means he's having anxiety from a flexibility issue; anything he calls "my ways" refers to a sensory-based problem and/or one of his stimming-like coping strategies. Sometimes he's bluntly negative and hard on himself: I can't listen. I forget everything. I'm just a weird kid.
And sometimes, out of the blue, he tells us everything that dozens of experts and evaluations have danced around and guessed at but never fully landed on:
Mom, I figured it out. There's something stuck in the space between my ears and my brain. There's stuff in there that doesn't belong, and it's keeping the things I hear from getting to my brain and interrupting my thoughts all the time. So you just need to take me to a doctor who can open my head and take that stuff out. And then I'll be fine.
That was over four months ago. Right around the time a few of those experts admitted that yeah, it's probably time to explore ADHD medication.
And so we immediately looked for a doctor who could help him with the "stuff" — stuff I always picture as a noisy cloud of static, packed into his head like cotton balls. (And yes, he's had multiple hearing screens — his ears and hearing are just fine.) We'll want another full private evaluation, of course, just to confirm, and we want to take him somewhere really excellent.
We wasted two months naively thinking the first doctor would eventually call us back — Noah's therapist sent him a personal note, after all, imploring him to — and another month sifting through the next round of recommendations in search of someone who 1) was taking new patients, 2) saw kids Noah's age, 3) had a reasonable waitlist, and 4) would actually pick up the phone and talk to us, for God's sake.
(Our pediatrician's top recommendation hasn't even cleared out space in her voice mail since December. And here I thought medicating a kid was supposed to be easy, with Ritalin being sold in vending machines alongside the candy and whatever imaginary designer diagnosis du jour us lazy, irresponsible parents want to blame our kid's behavior on!)
(Oh, I'm sorry. Is my bitterness showing?)
Our appointment is in April. Two more months of waiting.
I've probably started 20 versions of this post since Noah told me about the stuff in the space between his ears and brain, since we began to consider medication, and I've deleted them every time, thinking that maybe I should wait until we have the appointment and "know" for sure. Or that maybe I don't really want to talk about it at all, or shouldn't talk about it.
On the one hand, Noah's privacy weighs heavier on my conscience, and my interest in the constant feedback loop of online praise/criticism/but-have-you-tried-THIS has worn thin. On the other hand, not a single week goes by where I don't still receive at least one email from a fellow parent who has followed our special needs journey and is reaching out as they begin their own, or are simply navigating a new zig or zag along the way. And looking back, there are countless successes, ideas and resources we found solely due to you, the Internet, blog writers, blog readers, commenters, emailers and the like. Our lives (Noah's included) are infinitely better thanks to that collective you, and I feel like you guys deserve the occasional update. And it would be massively dishonest for me to pretend that the whole SPD/PDD-NOS/ADHD/IHAVENOIDEA thing wrapped up with a neat little bow at some point.
It hasn't yet. But I think Noah's finally told us why.