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.
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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. On July 1 first I’ll be teaching a No One Is Broken class at East West Bookshop in Seattle, WA. This will be the first time I’ll officially teach this class, although I feel as if I’ve been teaching it for years. There isn’t a class or a workshop I’ve taught or a lecture I’ve given that hasn’t included stories about Sawyer and me. Ostensibly, these classes, workshops, and lectures have been for writers who wanted to become better writers, but I often find myself wondering what these students have really come to learn.
I am reminded of something the novelist Deb Caletti said during our first interview. Writers often fall into two different camps: those who can outline, and those who absolutely can’t. Deb is one of the latter. “I don’t know how I’d teach writing,” she confessed. “For me, it’s kind of like just going down the rabbit hole.” Deb writes without much of a plan, you see. She has something she’s interested in and she follows it. If she’s authentically interested, that interest leads her deep into that rabbit hole. The rabbit hole has been given many names. Some call it simply the imagination, others the flow, or the zone, or the vortex. But I do like the rabbit hole, for when you enter it fully you feel very much as if you’ve followed a white rabbit into an alternate reality. Most writers I know prefer that reality to the one in which they must otherwise live. And for good reason. When you’re deep down in the rabbit hole, you forget to regret the past or worry about the future, you forget about fear, and you forget about effort. In the rabbit hole, there is only the next interesting thought and the next interesting thought and the next interesting thought. In the rabbit hole, the only right is what belongs in the story and the only wrong is what does not belong in the story. In the rabbit hole, there is no judgment, no comparison, no failure and no success even. The rabbit hole is all success. When I teach writing, I am really teaching my students to believe in the rabbit hole. The laws of the rabbit hole seem to contradict the physical and emotional laws of the world we all get about in every day. Many of my students have worked very hard all their adult life to learn the rules of the world so they might have something resembling success there. In my classes, I ask them to forget all those rules, and follow the white rabbit of their unique curiosity. This is exactly what I’ll be teaching next week in my No One Is Broken class. There are no broken people in the rabbit hole. Only physical things can break, and in this alternate reality my wholeness is known as what I love is known. In fact, in this reality my wholeness and love are one and the same. I much prefer this alternate reality, but I must believe in it to live there. It is easy enough to disbelieve it, and then, as quick as a thought, the world is filled with broken people once again. They’re everywhere, including the mirror. Now, all I want to do is fix the world and everyone in it. An impossible task that, and exhausting too, and somewhere in my fatigue, after all my fixing has led to nothing, I glimpse a tuft white hair, and it’s moving quick, and now I’m up and I’m after it. If you’re in the Seattle area, and you’d like to attend the class, you can sign up here. The essays I publish here could best be described as a spiritual view of what we call Autism. I am still somewhat uneasy with the word spiritual because of the many contradictory connotations surrounding it, but it remains the most accurate destination for what I wish to share. I have come to understand all spiritual teaching – whether in this space, or the books published by Hay House or New World Library, or in the Bible, or even from a particularly compassionate bartender – as an attempt to direct one’s attention to our unconditional wellbeing.
I spent most of my life being bounced around by conditions. I was bounced around by whether girls liked me or not, by rejection and acceptance letters, by my bank account, politics, sports, the weather. There are a lot of conditions and each one, it seemed, had the potential to make or break my day. And sometimes I made up the conditions. I would lie in my bed at night imagining a future where a trail of failure and bad luck led me to a wasteland from which there was no return. About the time Sawyer came along and began to be observed and tested I started wondering if it had ever been the conditions that bounced me around. To see your son being observed can be a disorienting experience. As his father, my job had been to love him. Within love there is no right and wrong; there is only love. But I knew the experts observing him were noting what he had done right and what he done wrong on their little clipboards. I did not like all this note taking they were doing, but was this not how the world worked? Was there not right and wrong all about me, and had I not lived my life naming this thing right and that thing wrong? Why should my little boy be spared the knife of good and bad? Because I loved him? How irresponsible to let a thing like love blind me to all that was wrong and prevent me from fixing it. Fortunately, children teach adults far more than adults teach children. In his own way, Sawyer – like every child with every parent – asked me every day, “Which do you believe in more: Love, or right and wrong?” There was only one answer, of course, but oh how terrifying it seemed sometimes. How am I to protect myself from what is wrong unless I name it? How am I to stay safe from my enemies if I do not recognize them? Sometimes choosing to love unconditionally feels like the last choice I’ll ever make. It as if I am lowering my shield, and only in that vulnerable moment will I learn the truth about the world. As soon as I lower it, however, I realize I would choose death over lugging that heavy shield about. I did not come here just to spend my days dodging and parrying blows. If life is not love then let it end, and if it is then let it be the only eyes through I see the world. |
William Kenower
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. Archives
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