We drove 15,000 miles this summer, from Portland to Portlandia by way of the Florida Keys. We're geographically challenged like that. Two months of nonstop together time with our three kids, putting our anxiety-prone youngest son Roman though a constant stream of experiences, activities, therapies, and trials, while our oldest son Quinn filmed the lot for our upcoming documentary. You know, the usual.
We worked with bonafide therapists, as well as parents, siblings, and friends of people with autism, and a fair amount of people who had never had any experience in our world whatsoever. Many graciously volunteered their time, gear, and expertise to the cause, free of charge. <3
Of course, a few people we contacted said no- the timing wasn't right, or they just weren't into being part of a documentary. Which I totally get, since Murphy's Law states that there will always be witnesses and gawkers present when your child is showing his proverbial ass on an ism day. Given the choice, sometimes you'd just rather pass.
Roman needs extra time to transition from one space to the next, and from one activity to the next (unless it involves, say, leaving a plate full of vegetables for a game of Minecraft). In fact, most change can be characterized as a "non-preferred task" for the little guy, and patience is the only salve. This is a lesson hopefully learned - on Roman's first day of middle school - by the lady in the SUV, while he inched over to the school bus even slower than usual. (<-- Four times, you needed to honk. Really? You didn't notice him covering his ears, toe-walking, or stimming with his hands? Or me, trying to commit your plate number to memory? You might want to look into some Lithium- yellowing of the skin and eyes be damned!)
This summer though, I was struck by how patient, intuitive, and curious these teachers - complete strangers, really - were with Roman. They drew him in by slowing their pace to calm his anxiety, using gentle voices, listening to his banter, playing with him, and letting him be the leader. They distracted and redirected him when he got off track, and respected his decision to opt out of activities that truly scared him (For the record, I wouldn't do trapeze, either.)
The notable exception being this weekend at Surfers Healing in Montauk, New York, when a gentle giant named Joe picked Roman up like a duffle bag, suited him up in a life vest, then kindly escorted him to a surfboard. Resigned, Roman climbed aboard, and with the expert assistance of surfer Raul Roman, he completed three runs. Maybe not hanging ten, but standing. And he wasn't even screaming on the last one!
Worried, anxious, and proud, I cried behind my sunglasses from beginning to almost the very end. Don't get me wrong- the Surfer's Healing staff is INCREDIBLE. All volunteers, and the program doesn't cost participants a penny. But with over a hundred kids surfing on Friday, sometimes you've just got to pick a kid up and hit the waves.
PS To see what a kid with autism can do on a surfboard, check out the documentary Clay Marzo: Just Add Water.