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I was sitting in a meeting room in the University of Washington Autism Center across from the center’s speech therapist and the woman who had evaluated my son. They were in the process of explaining to my wife and me that based on their assessment Sawyer would receive a diagnosis of high functioning autism. I didn’t really care about the label, though we needed a diagnosis to keep receiving help in public schools. What I wanted to know was how they would help us.
We’d been making some progress lately. In fact, we’d had a small breakthrough this past year–his first-grade year. We’d recently begun a practice called “joining,” where instead of asking him to stop humming and flapping, we started humming and flapping with him. It was a way of speaking to him in a language he would listen to. As a result, he went from seven timeouts a day at school to once-a-week. But there were still many days where we felt like we were treading water with him, that nothing was getting any better. Surely there was some new idea, some original approach that would lead to our next bigger, better breakthrough.
If anyone would have that new idea, I was certain it was the folks at the U. W. Autism Center. I first learned about The Center in a documentary narrated by Alan Alda. Alan Alda! I was very impressed that Alda lent his celebrity weight to the place. The documentary seemed filled with interesting, passionate people working with children in new and creative ways. This is just what I wanted: an expert to show me the way, to solve the problem I could not.
Having described his diagnosis, the woman who’d evaluated Sawyer, the expert, went on to lay out the magnitude of our son’s challenges: the reports from his teachers, the results of his tests. I’d heard it all already. Once you’re a parent of a kid like Sawyer, you quickly become inured to this sort of data. I knew, however, that it was well-intentioned, and I was sure it was just a ritual prelude to the unveiling of their new program.
“So,” The Expert said, “do you have any questions?”
“Yes,” I replied. “What we do next?”
“Well, I figure we’ll make an appointment with our psychiatrist.”
I felt a little like the ground had opened up beneath me. I was pretty sure I knew what this meant.
“What’s the psychiatrist going to do?”
“He’ll probably recommend some medications.”
There was no mention of drugs in the documentary. My wife and I were not interested in medicating Sawyer, primarily because we had both dealt with depression and anxiety in our lives and managed to find our way back to ourselves without drugs. Moreover, we didn’t need to go the U. W. Autism Center to find someone to suggest putting him on drugs. Doctors and therapists and teachers had been suggesting it since the beginning.
“That’s it?” I snapped.
The expert recoiled.
“Look,” I said. “My wife and I aren’t completely opposed to drugs, it’s just that we see it as a kind of a last-ditch effort, for when things have gotten really bad.”
“Well,” she said, “how much worse do you want them to get?”
I pictured how much worse things had been only six months ago when he was blowing up every day at school, and how things had changed since we’d begun joining. I started to answer, to remind her of what we’d done, how we’d hoped to build on earlier success when I realized we weren’t really talking about Sawyer or autism. We were actually talking about what it meant to be human, about what it meant to suffer, to succeed and fail, to feel loved or afraid–about how much worse it could get. The worse I could imagine life getting would be if there was something inherently wrong with me, that I was broken and only something or someone could fix me as if I was not properly equipped to lead the life I was meant to lead.
We thanked them and said we’d be calling, which we all knew was a lie. Driving home, my wife and I bitched about how much time and energy and money we’d expended just for that, but I could already sense some necessary shift occurring. We were done for the time being looking for some therapist or doctor or teacher to save us. In fact, I realized that I had quietly lived my life expecting someone to save me from my own misery–some agent or editor or authority, some king to knight me and tell me I’m ready, that I’m good enough.
When you have a kid like Sawyer, it’s easy to think certain truths don’t apply to him, that you must somehow rescue him from a perilously unhappy, unsuccessful, unwanted future. If I have learned nothing else being his father, it’s that no one is here to be saved. At best, we can remind each other of what we’ve always had and what we’ve always been. It may not sound like much when you feel lost in a storm of uncertainty, when you’re up all night with the kid, when those horrible reports come back from the school, but the truth of who we are, that we are all born perfectly equipped to live our unique lives, is the grounding ballast keeping everyone’s ship afloat.
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Photo by Pixabay.