No One Is Broken was begun from the same impulse with which most books by parents with children diagnosed on the Autism Spectrum were written – a desire to help. And like so many parents, the one I wanted to help was my child, Sawyer, who, more than anyone I knew, seemed most out of place in the world, who seemed most confused by what the world was and wasn’t asking of him. His behavior and his struggles were a magnet for my and my wife’s attention, and there were days it seemed that all our troubles would be answered if only Sawyer would start behaving normally, whatever precisely that was.
But No One Is Broken is a memoir, meaning it is largely concerned with the changes that occur within its narrator – me. The memoirist must accept that the only eyes through which he has ever understood life are his own, and that the landscape of friends and family, of lovers and antagonists, exists entirely within him. Storytellers are reporting back not what we have seen and heard, but what we feel and what we believe, because that is all we really know. It is a good lesson for the parent of a child diagnosed on the spectrum. Parents of these children often forget about themselves. It is a habit to which parents of all kinds of children frequently succumb, but it is particularly acute when a child has what we call special needs. It is as if we live suspended in a moment of perpetual anxiety, as a parent whose child has just gone missing must live. Until that child returns safely, nothing else matters – not work, not sex, not books or sports or hobbies or passions – nothing. Until that child returns safely, life as we normally understand it has no meaning. It is a frightful way to live, and yet so many parents I know, including myself from time to time, live there anyway. We want to be happy, but what parent can be happy when his child is in peril? Yet I can think of little that is more oppressive than having someone else believe that their happiness is dependant on my behavior. “Worry about yourself!” Sawyer frequently instructs us. There are days that seems impossible. There are days it seems that he holds the last piece in some puzzle of my wellbeing, and that I am waiting and hoping that he will at last understand what he has always possessed so that I can finally call my world complete. Happiness is simply not happiness without freedom, and I will never be free as long as another person, even my son, appears to hold my happiness in his hands. In fact, that is the belief from which all hatred grows, which is why no one has ever driven me closer to the brink of rage than Sawyer. It is also telling that Sawyer’s greatest complaint about The World is that it is not free. One cannot be free in school, or in a job, or even sometimes in a simple conversation, what with other people cluttering it up with their own interests and desires. Sawyer’s lifelong conversation with life appears to be about freedom, which is why I have learned more about it from him than anyone else. Every attempt to wring some behavior from him to satisfy my life has failed, and so I am left once again with myself. Here I am tempted to indulge my own autistic impulse, to retreat within myself to a silent kingdom where other people cannot wrest me from my throne of peace. I am all too familiar with this place. Yet it is actually a self-imposed prison term from which my freedom can only be gained by letting other people be.
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One of the best parts of being human is that we are free. I am free to think absolutely anything I want. There is not one person on earth who can make me think anything or prevent me from thinking anything. What I think determines what I feel, and what I feel is what I live. I am free. Unfortunately, this also applies to all the other humans on earth. What we think and feel also determines what we do, and what other people do does not always meet with my approval.
I began learning some hard lessons about freewill when Sawyer’s older brother Max first arrived on the scene. My wife described five year-old Max as a C. E. O. without a company to run. He would occasionally say to me, “Dad: here’s what I need you to do,” with such authority that I had to remember who was the adult and who was the child. As a child boss, he would also throw tantrums when I was insubordinate, which, not recognizing my employee status, I frequently was. One such tantrum got so obnoxious I decided it was time to drop the hammer. “Max!” I bellowed. “Go to your room!” Max stared back at me in confusion. “No,” he said matter-of-factly. I darkened my voice and pointed in the direction of his bedroom door with as much menace as I could muster. “I said: Go. To. Your. Room.” “But I don’t want to.” There it was. Size and age, it turns out, do not determine how free one’s will is nor it’s role in the direction of our lives. It is easy to forget this when your child behaves in such a way that he eventually receives a diagnosis of autism, high-functioning or otherwise. A diagnosis suggests a medical problem, which suggests lack of choice. Yet to treat any person as if they do not have a choice, as if they do not have freewill, is to forget that they are human. At my worst, I fluctuated between believing Sawyer had no freewill and believing he was abusing just how free his will was. Either way, he was often doing stuff I didn’t want him to do. But when he was eleven we began a practice that he would name Happy Fun Time. For an hour before bed he had to play with us. His rules, his games, but it had to involve us, not just himself. Sawyer’s social challenges had stemmed from an unwillingness that sometimes seemed like an inability to play with others. Thus Happy Fun Time. As Happy Fun Time progressed it occurred to me that for the first time he was choosing to play with others, and that he was choosing it because he had come to understand that it was as fun as playing by himself. Why would someone choose something he considered unpleasant? In this way, freewill and pleasure and pain are inextricably linked. We are all free, and we all want to be happy. Happy Fun Time was good for a season, and we eventually moved on to other things. But it became a model for me. The page of everyone’s life is blank, and we must all decide how we will fill it. There’s no avoiding this. The best I can do for another person, whether it is my child or a friend or a stranger, is remember that everyone has the same job – to choose what makes us happy. My introduction to the world of “special needs” children began when Sawyer was three and his preschool teacher told us we might want to have someone from the state have a look at him. A month later my wife and I found ourselves at a table with a group of experts who gently explained to us all that was wrong with Sawyer: He talked to himself instead of other children; he did not respond when his name was called; he spent too much time pretending. On and on.
It was disorienting and disheartening for a number of reasons, perhaps the most profound of which was that all of this attention was focused solely on his behavior. It was perfectly understandable that the experts should do this. Sawyer’s behavior was what teachers and children had to deal with. His behavior was his link to the outside world, his contribution to the life we were all creating. What else was there to consider but his behavior? Yet all I could think at the time was who among us at this table would want his or her behavior put under such scrutiny? Who at the table of adults who would never be called autistic believed that such scrutiny could tell the whole story of who we were? I recalled a day several years before when I’d brought a friend of mine to the hospital so she could have some stitches removed. While I waited in the lobby, an older gentleman stomped through the sliding doors. “I’m here to see Lisa,” he told the receptionist. “But I have to tell you I am not happy.” “I’ll let Lisa know you’re here.” “The parking in this place is atrocious!” continued the gentleman. “I mean it’s really awful. It’s like you people don’t care at all about where we’re supposed to park. I must have circled for fifteen minutes. That is really atrocious. If you people cared it seems to me you might actually do something about this.” Lisa soon arrived and shook his hand, but the gentleman wasn’t done. He started in again about the atrocious parking, and how difficult it was for him, and how long he had to look. He wanted to know what brain-dead numbskull dreamt up this scheme. Lisa, meanwhile, nodded and listened, nodded and listened. By this time, I had concluded this man was a jerk. I can’t stand guys like this, I thought. What’s wrong with him that he has to make everyone’s life miserable just because he couldn’t find a stupid parking space? Welcome to life in the big city, buster. And how can this Lisa woman bear it? Look how patient she is. How does she do it? She must be a saint. The gentleman’s tirade finally ran out of steam. Lisa nodded once more and touched his arm, “Okay then. Are you ready to start your chemo?” “Yes,” said the gentleman, and followed her quietly into the hospital. The biggest difference between three year-old Sawyer and the seventy year-old gentleman was that Sawyer could not yet tell us the story behind his behavior. And so we were left only with our imaginations and need for him to act normally. That is a potent recipe for misguided assistance. I still think of Lisa form time to time and her patient expression while she waited out the storm of the old gentleman’s complaint. What is a saint but someone who knows the story of who we really are and can see through the veil of our behavior? That is the light in which the lie of sin dissolves and we return to who we are. Though I did not understand it at the time, joining Sawyer was my first spiritual practice. Joining, as I have described earlier, was the practice of doing whatever he did, which in our case was running back and forth humming and flapping and thumping our chest. The idea was that instead of telling the child to stop doing what he was doing and join you in the “real world,” you join him in his world and see where it goes from there.
I did not see it as a spiritual practice because, A) I didn’t know there was such a thing; and B) all I was trying to do was get him to spend less time humming and flapping and more time acting like what I believed was a normal kid. This wasn’t so easy. The real challenge in joining wasn’t doing what he was doing, but not judging what he was doing as wrong. This meant that even though I wanted conditions—that is, Sawyer’s behavior—to change, instead of pouring my efforts into changing those conditions, I instead changed my perception of the conditions. Or in other words, I had to learn to change what I actually had the power to change. Because once my perception of Sawyer changed, once I said to myself, “What if he isn’t broken? What if I’m not broken? What if no one is broken?” conditions did change—namely, my behavior. Then, lo and behold, once my behavior changed, so did the world around me, including Sawyer’s behavior. Moreover, I saw that if I judged humming and flapping as wrong as I hummed and flapped, Sawyer would go into another room to hum and flap in peace. If I didn’t judge it as wrong, he’d stay with me. Which meant that even the effect my behavior had on the outside world depended entirely upon the perception from which that behavior was born. This is why joining was a spiritual practice. Though the world seems full of conditions that appear to need changing – from children’s behavior, to police departments, to rioting cities – my job is not to correct all those conditions until they suit me. My job is to correct my perceptions of those conditions and then behave accordingly. I have to admit that this seems like a dangerous choice sometimes, like walking through a warzone without my helmet and bayonet. I pay attention to those conditions precisely because they threaten me. I must remain vigilant and alert, ready to correct conditions with a bayonet thrust or a letter to the editor. Such is the perception from which a world of enemies is grown—enemy nations, enemy weather, enemy children. It is an intolerable world, a world begging for change, a world no one would choose to live in if they believed another world existed. No One Is Broken could have been told as the story of how a father (and mother) saved a son. Things were looking dark for this little boy until they began joining him and not judging him. It could also be told as the story of how a son saved his father, how the act of not judging this little boy allowed this man to pull himself from his own darkness.
But the truth is no one saved anyone from anything. To be saved would be to suggest we were somehow in danger, that one or both of us were balancing on some precipice beneath which lay suffering without return. I admit there was one night when I perceived myself as having edged up against just such a precipice, and that if I were just a little carless I might fall from life forever despite wishing to remain upright. What I came to understand about that suicidal cliff is that I only reached it because I believed it existed, that the very belief in suffering without relief immediately creates suffering from which the only relief is disbelief. If that sounds circular, it often felt that way to me. In those early years, when we were first joining Sawyer, there were times when it was as if I were seeing him through some funhouse mirror—one moment he looked broken to me; the very next he did not. All that changed in those two moments was what I was thinking. If I thought he was broken he looked broken; if I did not think he was broken, he did not look broken. The question, it turned out, was not how to save him or fix him; the question was how did I want to see him. If I did not want to see him as broken, then I could not think that he was broken, I could not believe in brokenness. As a parent, it is tempting to view such a choice as an elaborate excuse to bury your head in the sand, that the job of the parent is to remain ever vigilant to quietly mounting threats. In fact, it is quite the opposite. I do not think there is anything wrong with burying your head in the sand if you are seeing a great many threats. Sometimes you have to close your eyes to see. My only job in life, whether I am a father or a son or a husband or a writer, is to perceive the world without threats. Only then will I know how to take action and move forward in a way that is in alignment with life, rather than dodging landmines of my own invention. Living in this way becomes a practice in trusting what you do not see. I see landmines all the time. They seem quite real and ready to blow me into a thousand unrecognizable pieces. That’s a deathless moment when I step into that trap anyhow. Blow me up, I say. I’d rather be a thousand pieces in the wind than live in a world full of enemies and bombs. End it if you must. And so I step, and every time I do something else dies in me, into whose space life quickly returns. |
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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