This week, we asked our OT to do some new assessments on Billy. We’ve noticed he is slipping back in some skills he had already mastered, and that he’s struggling to sustain his energy while doing some tasks.
We don’t have the reports yet, but the summary of her handwritten assessment forms places Billy in the 1st percentile. It’s the same assessment (scaled for age) she has done every two years (or so) since Billy was 20 months old. He has headed down the percentile scale across his life.
We are used to these low scores. They suck to read, but we’ve been in this game long enough to know they are not any value based measure of who Billy is.
What they do make me think is… Billy is a total legend.
With motor skills poorer than 99% of his same age peers, he manages a hell of a lot.
He’s a master on the trampoline. He’s especially good at wrestling his friends on the trampoline (wrestlemania bounce) and also bouncing on a giant fit ball on the trampoline – the double bounce. He does a mean ‘cheetah chasing a gazelle’ on there, even managing to swat down the hapless gazelle (unsuspecting co-jumpers) with incredible coordination.
He’s able to build meticulous toy and craft material recreations of Attenborough moments, famous Thomas the Tank Engine scenes and the odd adventure in Bikini Bottom or Danville. They take time (days), energy (often requiring begging for chocolate) and a lack of giant hairy dog ‘help’ (a common hazard).
He manages quite a bit of PS3 and PSP action, never needing to stare intently at his thumbs with his tongue stuck out (as his mother must do to even get the damn things going).
Do we worry about his skill level? Oh yes. Are we concerned about what he can and can’t ‘pick up’ in his lifetime? Completely. Do we devalue him by acknowledging his deficits. No way.
Having a child with autism is like being stuck in a hall of mirrors, some days.
You never quite know which one of your instincts you should be following.
Love? It’s a brilliant motivator, but does it blind you to the hard things you really should be facing.
Ruthless research? It’s great for the cognition, but exhausting for the heart, and ultimately a complete brain scrambler.
Focussing on the future? It’s equal parts thrilling, terrifying and pointless.
So, on the days when things like 1st percentile get wafted past my eyes, I let myself loose on the rollercoaster, and open up my senses. Who knows what I will learn?
Cranking up the hill I think, ‘Hey, he’s talking, he’s happy, he’s a really happy kid, he’s funny, he’s charming, he’s engaged with his life.’
In that momentary point at the top, I look at the view and yell, ‘He’s the next David Attenborough, you idiots, who cares if he can hold a pencil!’
Then we plunge down. Past certain teachers who saw me as the ‘issue’, through the corridors filled with medical equipment, past the doctors flicking God’s deck of cards at us, directly towards the faces of family members flicking between confusion/concern/acceptance/judgement, before corkscrewing through the autism community with all their varying polarising certainties.
Before I hurl my lunch (and you know how much I hate vomit), the rollercoaster slows. I look down and I see Billy. He’s hanging with his Dad and he’s safe.
He’s not on the ride. He’s grounded. He’s living today like it’s the best day ever. He’s not thinking about his ability to throw a tennis ball, or why his fingers can bend backwards to his wrist. He’s totally loving the whooshing of the rollercoaster, and his face lights up when he sees me.
I can’t ask for anything more, and I’d be wasting my energy to try, right now.
So what if the other 8 year olds are clambering off the ride beside me, high fiving each other (without touching the backs of their own wrists with the force of the slap). They’re probably going to vomit soon, anyway.
Which is my cue to leave.
Valerie's increasingly random ravings can be found at Jump on the Rollercoaster.