And in the wake of all the negativity coming out of the Dateline episode on aging out of school autism services – AND a crappy tour of a probably typical dayhab setting to reinforce that building a rich future for the boys will take some oomph to achieve- just take a look at the face of J above.
Smiling, determined, and hopeful.
This is face of autism we need to remember. Not just the disability – the capability. The assets that you might have to look beyond the behavior to see.
This particular day was emblematic of so many for parents on the autism sojorn. I studied the trail well and it was supposed to be well travelled, but we took a side path that wasn’t. The trail markers disappeared. We had to gauge where we were going by instinct, reading the rise of hills and faint traces of possible foot steps before.
Swift running waters underneath the snow covered brook gave out under our feet, and 2 of 4 of us almost went for a swim. The foot path was so unstable we’d sink up to our waists. We wandered lost for a while, following someone else’s tracks that led us nowhere. We were way, way slower than most. My knee ached every time I sank in and to solve all the above I used the terrifically sensible strategy of a brief cry, which seemed like a good idea at the time anyway.
And yet- we emerged. We found the summit and it had J beaming as above – beaming as he does when he hikes. The views took your breath away, with hundreds of summits in bluebird view, many of which we’d done. W didn’t flop once, or even require much motivation. We were the team we’d always been – flexible but resolute. We made it, in our own way and pace.
Creativity is a magical thing, and knowing you can employ it is even better. There appear to be a range of adult day programs and living options, which is great, except there is always some Authority with a stupid gotcha rule showing up. Just like school teams so quickly forget there’s an I in Indiviualized Education Plan (IEP). Yet I’m watching a number of uber parents come up with novel options, and while it looks like hard work, it also looks very exciting to be finding your own trail. I know that feeling well.
With 11 months to go, I’m sure there will be plenty more program administrators who invoke this or that rule to make sure something doesn’t fit for W and J. And I’m still revising my map of what I think are the best trails for them.
But even when the going was a real slog on this hike, we made it, and there was that moment in the sun when the beaming came as much from within J as from the skies. I carry that feeling with me always. In Eastern circles it’s called right livelihood. Here, I call it my next best summit.