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Adopting a New Perspective
Over time, his therapy became more like play sessions that tapped into his great passions: music, instruments, machines. In the frantic push to check off tasks mastered, we didn't want to lose sight of the ultimate goal -- a boy who played with other children, could tell us what he needed, and was interested in more than dribbling sand. We tried many therapies: floor-time play, sensory integration, auditory integration, music therapy. The good news is that these therapies do work, and autism today is far less often a life sentence of withdrawal and self-injury than it was in the past. For Ethan, that's meant an end to long, mysterious crying jags and tantrums that ruled much of his early life. He's happy now, delighted by countless peculiar pleasures, like leaf blowers, motorcycles and Thomas Edison.Here's the other side of the story: We've fought this battle for nearly seven years, and we haven't -- in all honesty -- won. We don't have a boy anyone would say is a miraculous example of recovery or even of particularly high-functioning autism. When you start down this road, you read about kids who recover enough to enter first grade showing no signs of autism. You dream of one day telling such a story yourself. Is it sad to admit you can't? In truth, less and less so.
All the families I know who wage this war come to a point where they lay down their arms. Sooner or later, battling the disorder starts to feel like battling the child. When your son has enough words to tell you he likes dribbling wood chips because it makes him feel calm, that it's a way for him to sing inside his head, you think, Huh. Okay. Fair enough. When he laughs at the same intersection whenever you go through it, and says, "I don't know, I just love that traffic light," you think, Well, there are worse things to love. He is who he is. Autism is part of it.
You also come to see how autism is a cloud with its own silver lining. Ethan's passions and room-pacing joy at the prospect of a concert, of Halloween, of a stay in a hotel with a pool are so total, it's impossible for those around him not to be infected by it. I know families who plan trips around train rides and planetarium visits, who cover their walls with pictures of the 43 U.S. Presidents or the four Beatles. They do it because their child's interests are so precise, so absolute, that -- while laboring to teach them the skills they need to function in the world -- these parents learn something too: the pure joy of arbitrary passions.
Ethan is ten now, and it takes all of three minutes to spot his differences, in the way he rocks slightly when he's excited, or buzzes in a circle around someone he's just met, repeating the last thing they've said to him ("Hello, Ethan! It's nice to meet you!"). He attends a regular public school, with the help of an aide, and has friends, though those he loves most are Daryl and Stu, the custodians who let him help with vacuuming, and "Mama," the dishwasher who lets him scrape trays after lunch. He loves these people because they're kind, gentle souls and also, I think, because they work with interesting machines. Waging this battle has taught us to be grateful for all these people and the small but immeasurable acts of kindness we witness daily. It's also taught us to celebrate modest victories, to see and count the smallest blessings, and to adopt a new perspective on defining success for all of our children.
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