Raising a child with autism comes with a lot of crap. I’m not talking about the stares from strangers, the battles with insurance companies and school boards, or even the underlying, ever-present stress of wondering what my son’s future will look like. That’s all part of it, of course. But the crap I speak of today is of the tangible, dust-collecting variety.
What can I say? Autism takes up a lot of freaking space. There are the binders of therapist-recorded data, the pendaflex folders filled with evaluations and invoices, and, of course, the endless piles of teaching materials.
From the huge dry erase board on which we draw Benjamin’s daily schedule, to the card next to the bathroom sink featuring a pictorial breakdown of the act of hand washing (water on, wash hands, water off, dry), to the playroom closet stuffed with toys and games and visuals his therapist uses during sessions, our house is pretty much blanketed with tools that help Benjamin learn to communicate, follow routines, and transition more easily.
Benjamin, 8, was diagnosed 6 years ago, so by now these items have become a natural part of the landscape of our home—a part I rarely think about them. That is, until Passover rolls around.
I’m one of the crazies who does a whole top-to-bottom cleaning thing before the holiday, so every spring I’m forced me to confront (and organize, weed out, and de-grime) the sheer amount of stuff.
The process is always cathartic, and often emotional, too. This year the thing that really got me was the bin filled with stories and other visual tools we’ve used to get Benjamin through rough times. Maybe it’s because they were all made by his old therapists, who I’ve missed so much since moving out of New York last summer, or maybe it’s because the materials are full of cute photos of Benjamin, but I was pretty choked up. This wasn’t just a dusty pile of laminated print outs, this was a history of my son and his development. Here, a few highlights.
* Benjamin’s Exercise Book, age 4: Atara, Benjamin’s old occupational therapist put this together so we could practice the yoga poses she was working on with him at school. I was floored when I first saw it—not only because she figured out that yoga could give him the sensory input he needed to stay calm and focused, but because he could actually do it. There was my kid, who couldn’t follow a simple command like “throw it in the trash” or “say hi to Daddy,” doing downward dog.
* A Trip to the Barber Shop, age 4: To say that Benjamin was terrified of getting a haircut is a gross understatement. Atara practiced the routine with him (sitting in the chair, wearing the cape, getting his hair sprayed and finally snipped) a bunch of times and when he got really good she made this book so we could read it together before future visits to his stylist.
* This Week We Are Going on a Trip, age 5: Watching Benjamin learn to ski was mind blowing. I’d forgotten how we used to have to duct tape his gloves to his jacket so he wouldn’t pull them off until I saw this book his teachers made to prep him for an upcoming trip.
* Yeah! It’s Time for Passover!, age 6: Benjamin has a hard time with change, and things really change over Passover. Megan, Benjamin’s former speech therapist, made us this book to help Benjamin get mentally prepared for a trip to Safta’s house, and for the sudden absence of his favorite foods. This is one I’m going to edit and use again this year.
* Calendar, age 7: Even though I talked about our move often with Benjamin before it happened, I wasn’t entirely sure how much he understood. To help him process the information, Megan made this calendar, which laid out when everything was happening. Interestingly, every time we tried to go over it with him he became super anxious, showing us that he likely understood way more than we gave him credit for.
After lots of kvelling and a few tears, the stuff is all organized, free of stray Cheerios, and packed away in the playroom closet until next year, when I’m sure there will be lots more to go through.