Rainman.
That's what Mr Kish and I would often whisper to each other when BB was younger. Before we knew. I know it sounds un-PC and horrible, but I promise no one else heard us and it just seemed oddly fitting at the time. Still, knowing what we know now, we'd never have said it.
BB was "quirky". His whispered nickname started because we used to observe him saying or doing things well beyond his years. He just "got" things, you know? Deep things; different things. But there were all sorts of things he didn't get, like how to play with other children. He spoke like a wise old man, but he couldn't figure out how to feed himself. He stood in front of the The Lion King, jumping up and down and flapping his hands and we thought he was just excited because he was rooting for Simba. That he really understood the story. But, he couldn't catch a ball to save his life. He got freaked out by crowds and loud noises and we laughed that, clearly, he was his mother's son. We joked about his aloofness -- said he was just thinking his deep thoughts. But he wasn't making eye contact. He wasn't making friends. We joked about his episodes of spaciness -- he must be busy solving differential equations, we giggled.
We whispered about our Rainman and we rolled our eyes in mock frustration. We thought BB was just developing at his own pace. We thought he'd outgrow it. To his credit, Mr Kish was concerned well before I ever was. He worried about BBs inability to follow directions and his tendency to get lost in his own world. Each time I dismissed the concerns with the same mantra: "he's just a little kid". I thought he'd outgrow it.
Then BB started pre-school and, sometimes, we'd tuck ourselves off somewhere so we could watch. To reassure ourselves that he really was fine. That he really was outgrowing it. We saw lots of kids doing lots of fun things -- running, playing, climbing, chasing, making friends. BB paced around the perimeter. Alone. He'd do one lap around and then another. He didn't speak to anyone and no one spoke to him. His teachers marveled at what a compliant and easy child he was. They wished everyone was like him. They loved that they never had to discipline him. Still, though, he paced. Alone.
Well, we thought, it must be the school. They're clearly not giving him what he needs. So we found a different school, Fancy Private School, and enrolled him there. I'm not quite sure how we found the money to pay for FPS, but we did. About 8-weeks after he started there, his teacher requested a conference which started with her letting me know that she'd been a special ed teacher for many years and she was quite certain that there was something wrong with BB. He's always "in space", she said. He can't follow simple directions, and he's not interacting with the other kids. He needs to be evaluated.
The pediatrician seemed to be a good place to start. About 7-minutes into our visit, the pediatrician declared that it sounded just like ADD. He suggested we try this great new drug, the one he was giving to his very own daughter. It would be magic, he said. And totally safe. I left the office without the prescription slip and made an appointment at a local child development center for a full developmental evaluation. My insurance company made it clear that I was on my own for this evaluation -- they weren't interested in my son's development.
The evaluation revealed loads of sensory issues. Not the "oh my god, get my feet off this grass or I shall scream until I'm blue" type sensory issues though. Those kids are pretty easy to spot, and parents and caregivers are generally pretty motivated to address the sensory issues if for no other reason than to stop the bloody screaming.
No -- that was not BB. BB has different types of sensory issues. We all know people who are coffee-addicts. Chances are good that you're even one of them. You stumble out of bed in the morning and declare yourself unfit for human interaction until you've tossed back at least one mug of the stuff. You need to jump-start your mind, right? Well, imagine getting out of bed in the morning and being handed a rather complex book to read (and, by the way, they'll be a quiz on that) or being asked to fix the transmission in your car. You're just not there. You're not ready. You need some coffee, a few stretches, and likely even a shower before you can really tackle those demands.
Now imagine that the "I'm not quite ready yet" feeling is how your brain is wired. Imagine if that's your default setting. Imagine trying to keep up with the world around you -- the demands of your bosses (or parents or teachers), the subtleties of social interactions, even the simple basics of everyday living like dressing, brushing teeth, and washing. Don't they all seem so much more daunting when faced from the fuzzy-headed first few moments of wakefulness?
So BB was diagnosed with a sensory-modulation disorder. There was more to come though -- marked deficits in both fine and gross-motor skills (I cringe when I think about how we joked that he just inherited his dad's athletic prowess), deficits in motor-planning, concerns about visual processing, the frustrating lack of eye contact and the weird staring episodes.
The occupational therapist referred us to a neurologist, who after a variety of tests (including an EEG to rule out seizures), told us what we already knew. BB was "on the spectrum". He had Asperger's syndrome.
Now, this did not come as a big shock for us -- the neurologist stated that BB was practically the textbook definition of Asperger's. Actually getting the diagnosis was actually somewhat of a relief. We knew something was wrong and now it finally had a name and we could begin to take it on.
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