While he was in school, Sawyer was a part of “inclusion programs,” meaning he spent most of his time in traditional classrooms with support. That support was a special education teacher who would be available to help him with the class work if he did not understand the instructions or to intercede if his behavior got out of line.
For many years, I could not imagine Sawyer functioning in the world outside of our house without this kind of support. There were days after I had reminded him to brush his teeth, get dressed, eat breakfast, go to the bathroom, come inside, put on his shoes, stay on the sidewalk, lower his voice that it seemed a wonder that he knew to breathe without me reminding him to. It can be a little exhausting sheepherding your son through life, but it also left me feeling needed and with the vague illusion that I was maintaining some control over a situation that frequently seemed teetering on the brink of chaos. As a writing teacher and coach, students and clients come to me also looking for support. Facing a blank page and finding the story you most want to tell can feel like a lonely and frightening and chaotic journey. How does one know which is the right word or idea or character? Writing a story is a journey I have taken often enough now to know that I am never taking it alone. I may be the only one at my desk, but writing has always felt like a conversation, like a relationship, and as long as I remember to treat it as such, the answer to the question, “What should come next?” is always answered by and by. This is the support I aim to offer my students and clients, to remind them that they already have everything they need to answer all their creative questions. I could never take the place of that friend we call our imagination, our muse, our guide. All I can do is remind them that such a friend exists. So too with Sawyer. That friend to whom I turn in my creative life does not head home once I am done writing. He does not differentiate between the question, “How best should I describe this scene?” and, “What do I want for dinner?” It is all the same to him. It is easy to think that because Sawyer has appeared lost in the world that the same friend that has guided me through books and love affairs and careers has for some reason been mute in his life. It is easy to think I must be that friend. But I cannot, and the friendliest thing I could do is to somehow remind him to listen to that which is already speaking to him, to remind him that he is fully equipped for is journey. Once he understands how supportive and loyal that friend is, he is going to leave. That is the direction of his life. A part of me can already feel how I will miss the unique intimacy this kind of parent-child relationship, but in truth he will not be taking with him on his journey anything I do not already possess. To believe otherwise is to believe we are all incomplete and unsupported, a lost herd of lonely sheep, set astray in a world in which freedom equals isolation.
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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. 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. Many of the writing clients I work with have spent some time in workshops or MFA programs where writers gather around and talk and talk and talk about each other’s stories. All the attention in these environments is on The Manuscript. What is right with The Manuscript and what is wrong with The Manuscript? Is this sentence over the top, or stylistically daring? Should a character be dropped or a new one introduced?
Typically, these authors arrive with their manuscript in hand, ready to get to work. Typically, I will not even look at that manuscript during our first session. I certainly understand the impulse to focus exclusively on the manuscript. If this thing were what it should be, if it were polished and engaging and ready to be published, they wouldn’t need me. The problem is the manuscript. Let’s fix the problem. But the problem is rarely in the manuscript, and is almost always within the author. It is impossible for an author to tell the story he/she most wants to tell if that author simultaneously believes no one reads this sort of story any more, or the market is too crowded, or they aren’t smart enough, or talented enough. The list goes on. Clear away these useless thoughts, and the manuscript usually finds its form. The same is true for parents of kids on the spectrum. How easy it is to only focus only the kid, the kid, the kid. The problem is the kid. How do we get the kid to start doing this and stop doing that? What therapies should we try? Should we use drugs? What about vitamins? What about gluten? What should we do about the kid? If only I could fix this kid I could know that he is going to be all right and I could be happy. There are nights that happiness feels like something I have necessarily deferred until the question of the kid has been answered. Isn’t this what it means to be a good parent? I have decided for myself that it is not. I cannot think of one instance where I have received a clear and enlightening answer to the question, “What should I do about Sawyer?” Likewise, all my attempts to fix him – and there have been many – have failed. Though I am his father, I have no actual power over him. His will is precisely as free as mine. If I forget this, he will remind me. And so the best question I can ask myself is: What if no one is broken? What if I am not broken and he is not broken? What if all the people I disagree with and fear are not broken? What if no one is the world has ever been or could be broken? What would I do then? To ask this question is to correct the only thing I have any power to correct – namely, my perception. I could no more fix Sawyer or myself than I could teach a mouse to fly. But if I believed that mouse were a bird, I might heave into the air and mourn its violent return to the earth. What a tragedy. The world of broken people is a tragic world, a world where true happiness is won through the roulette wheel of talent or genetics or indifferent coincidence. It is a world where no one is free, and extinction is the only certainty. Who would live in such a world by choice? No one, or course, and yet I must choose everyday, with every action, with every thought, where I wish to live. Several years ago the book The Dyslexic Advantage by Drs. Brock and Fernette Elde came across my desk. The idea behind the book was quite simple: Dyslexia is not a disease but an orientation with its own inherent advantages and disadvantage. It had only been treated like a disease because A) we gave it a name; and B) parents and the therapeutic community had focused solely on the disadvantages, such as struggles with reading.
It is perfectly natural to focus on what we perceive as disadvantages. I do this all the time with myself. Something I want is not coming to me effortlessly; in fact, it may not be coming to me at all. At times it seems as if this thing that I want is all that stands between me and happiness. That being the case, I focus more and more of my attention on this desire that became a challenge that is now becoming a problem until I have forgotten all those parts of my life that are not a challenge and it seems as if my whole life is nothing but a problem in need of fixing. This is also sometimes called “self-improvement.” Reading The Dyslexic Advantage I was reminded of a conversation I had with Sawyer years ago. His pretending, I explained, was like a superpower. It was as if one of his hands possessed immense strength. With this hand he could grind rocks into dust. Unfortunately, lacking fine control, that same hand shattered glasses whenever Sawyer tried to take a drink. Because drinking a glass of water is more common and practical than crushing rocks, this superpower was most often seen as a disadvantage. Our goal then was not “cure” him, but to help him learn to harness his power. Sawyer was uninterested in this explanation when I offered it to him nearly ten years ago, and he is largely uninterested in it now. He is uninterested in it for the same reason most of us are uninterested in it: because he is unhappy when he runs up against those challenging parts of his life. He wants something and he cannot have it. He is unhappy that he cannot have it. He wants to be happy. What is wrong with him that he cannot have that which would make him happy? Don’t talk to me, he says, about challenges and superpowers and learning and evolution, just give me that damn thing so that I can be happy! And I think, welcome to the human race, my son. I’m going to go out on a limb here and say that we will never cure autism or learn what causes autism because it doesn’t exist. What we call autism has spread like an epidemic because our definition of it has spread from people who would not talk or respond to touch to people like my son as we have begun to recognize the connection between the two, once too distant to see, now increasingly apparent. Perhaps a day will come when we will all be called autistic, when we recognize within everyone the temptation to retreat from others, to turn away and avoid the glare of attention, to think only of our own needs and not the needs of others. And should that day come, just like with a fatal disease, perhaps something within all of us will die. Perhaps if we all believed we had caught autism, it would be the death once and for all of our belief in broken people. |
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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