If your child is diagnosed with any sort of behavioral disorder, you will eventually find yourself sitting in the waiting room of a neurologist, or a speech pathologist, or an occupational therapist. These waiting rooms are not like those of a traditional pediatrician. For most parents, a trip to the pediatrician is little a more than a clinical celebration of their child’s growth and evolution. Sometimes there is a problem; but just as often there is not.
You would not be in the waiting room of a neurologist, speech pathologist, or occupational therapist unless you believed something was wrong. You are usually not alone in these waiting rooms. I rarely talked to the other parents while we waited. Like me, they had their own son or daughter to chase after, their own little fires to put out.
Sometimes I would play a game of picking out what about the child brought him here. Usually it was easy: the chirping noise, the repeated phrase, the blanket over the head, the outbursts. Sometimes all that spoke of the challenge was a weary concern on a mother’s face. I found I liked the variety. Plus, it was nice to be somewhere Sawyer didn’t stick out for his behavior. You really couldn’t stick out in these waiting rooms.
I don’t like doctors’ offices. The problems that bring us are so incredibly personal, and the office is necessarily impersonal. But these waiting rooms were like compassion terrariums. Gone were the ticky-tacky parental hand wringing over grades and batting averages and leads in school plays. Gone were talks of best piano teachers or advantages of private schools. All that was left us, it seemed, was this question: How will this turn out? For most of us, the model of life from which we’d grown could not be recognizably replicated in these children. So how will this turn out?
I have to admit that I liked the feeling of being around a bunch of people stripped to this essence. The rest was all bullshit anyway. I had dabbled plenty in bullshit for most of my life, and I knew from practical experience how easy it was to worry over questions whose answer would never meaningfully affect me one way or another. If you can let yourself be curious, and not merely worried, “How will this turn out?” is not such a bad question. As you wait for the answer, you inevitably find you are more open to what might come than you had previously believed. The path was not so narrow after all, as these children stray afield, leading us where we might not have otherwise gone.
Anat Baniel pointed out that what we call autism is not behavioral, but perceptual. I thought this was a brilliant distinction. It is the child’s behavior that draws our attention, and it is often the child’s behavior that we are trying to correct or improve or simply worry about. But behavior is always a reflection – or really a manifestation – of perception, whether the one doing the perceiving is a child on the spectrum, or you, or me, or the Queen of England.
Which is to say when my perception of the world changes, so does my behavior in that world. If I perceive a threat, I’m going to behave one way; if I do not perceive a threat, I’ll behave another. Many an argument with my wife has stemmed from me confusing an observation for a criticism. In fact all of my “worst” behavior, all my fits and unkind words, all my little addictions I’ve had to break, all my retreats into fantasy, were the product of my perceiving a threat where one did not exist. If you start swinging your sword at imaginary dragons, you’ll frighten or hurt those closest to you.
So how am I to help my son whose behavior sometimes suggests a perception of the world that is a bit askew? Sometimes talking helps. When I say talking I really mean storytelling. There are friendly stories about the world and there are unfriendly stories about the world. There are stories full of villains with no love in their hearts, and there are stories of people who become so frightened they will hurt anyone to feel safe. Sometimes he’ll listen to these stories. Often he won’t. If the story smells even a little of a life lesson he did not ask for he’ll retreat to that impregnable fortress in his mind he discovered deep in his childhood. He spent so much time in that fortress once he was called autistic.
I’d rather not be the one responsible for sending him there. I have one of these fortresses myself, and it’s tiring spending all your time holed up within its walls. Strange, because he and I retreat for more or less the same the reason – other people are exhausting. Or are they? I have found the best way for me to help Sawyer is to learn to see the very world I am describing for him in all my stories. I cannot see it behind my ramparts. All I can do there is wait for the threat to pass.
To stay in the game, however, is to give the world and all its people another chance. I don’t like to be wrong, but I have had to learn my happiness depends on recognizing just how consistently wrong I have been most of my life. I have been wrong every time I have called someone an enemy, wrong every time I thought I wasn’t good enough, wrong every time I believed someone did not love me. And I have been wrong every time I believed I needed someone to behave differently for me to be happy.
I am immeasurably grateful for how dependably wrong I have been about all these things. The world is always right if I can but perceive it so. Odd to know that and still see wrong all about me, yet I do. I see it and must decide if the dragon is real, if the castle I desire requires higher walls or just more windows.
I had the pleasure of speaking at a writer’s conference this past weekend about how a writer finds his or her voice. I decided I would tell some stories about Sawyer because so many of our challenges as a father and son centered around whether what we were saying was being understood by the other. Though I didn’t intend this, I soon understood the audience was that much more interested in what I had to say because my stories involved the challenges of a young child.
There is something more compelling about a child’s struggles compared to an adult’s. The child appears innocent, and whatever challenges he must overcome are often interpreted to be the result of the hand he was unfairly dealt. An adult’s challenges, meanwhile, are more than likely the product of some poor choices – you reap what you sow.
Which is why so many people who approached me after the talk wanted to know one thing: How’s he doing? This weekend reminded me that at some point I am going to have to learn how to answer that question to my own satisfaction. For the record, I said he was doing fine, which is the truth. It is also not the truth because it suggested that he ever wasn’t doing fine.
It is very easy to sound politically correct when I write or talk about Sawyer in this way. I am his parent, after all, and it is my desire that he be all right, yet there he was once upon a time not talking, or talking to himself, or not doing any schoolwork, and so on and so on and so on. How is that doing fine? Yet the only way I was ever able to be of use to him – or to anyone for that matter, including me – was to never try to fix him, but only help him grow.
To be fair, if you were to ask me today how I am doing, I would tell you that I’ve never been better. I have never been happier, more prolific, or more content. This, by the way, is in comparison to how I used to feel about my life, when I wasn’t nearly so happy, prolific, or content. And yet nothing has actually changed in me other than learning how to use what I have always had so that I could do what I have always wanted to do. The equipment was always intact. It was always perfect and perfectly in service to whatever I wanted.
The worst question I have asked of myself in my life was: What is wrong with me? That the question was never answered should have been a relief, but it was the just the opposite. I took the “Nothing” my mind gave back to mean I would never be fixed, and so I would always be unhappy. And yet no matter how dark it got, I wasn’t always unhappy, and then I would look up and realize I had forgotten to ask what is wrong with me for a while and I couldn’t quite remember what needed fixing.
Life was as interesting as ever, and there was a friend coming my way. “How you doin’, Bill?” he’d ask.
“Fine,” I would answer, and it was always the truth.
I am the author of Fearless Writing: How to Create Boldly and Write with Confidence, and Write Within Yourself: An Author's Companion. Learn more here.