Sawyer received a diagnosis of Autism largely because of one behavior, which I called pretending. In many ways, it was typical childhood behavior. While pretending, he was, like a lot of children, entering into a dream of a story he was imagining. But while imagining this story he would also run back and forth, hum loudly, thump on his chest, and go so deeply within this dream that it was difficult to get his attention even if I was standing right in front of him.
Perhaps as you read this now it is obvious enough why his parents would see this behavior as a problem. In fact, this was not initially the case. All kids pretend, after all. Max, our older son, used to run back and forth and flap his hands while he dreamed up his stories. A friend of my wife’s who taught high school noticed this behavior and said, “When they see that they’ll call him autistic, you know.” How absurd, I thought. Why label someone because he flaps his hands? Quirky as he sometimes was, Max was in fact never diagnosed with anything other than a sharp sense of humor. So neither my wife or I saw Sawyer’s humming and thumping and deep pretending as a problem. Until, that is, his preschool teacher mentioned that she thought someone from the state ought to observe him. Somehow, over the next six months, after he was observed and tested, after we had met with experts and arranged for therapies and wondered about schools, his pretending became a problem, which meant we had to solve it. A problem, you see, is a threat to our wellbeing – and a threat to our wellbeing is intolerable, for our wellbeing, in the end, is all that actually matters. Though Sawyer’s behavior has evolved and changed over the years – evolved, in fact, to the point where, depending on the circumstance, one might be surprised to learn he ever received any kind of diagnosis – we never did solve the problem of his pretending. We could not fix what wasn’t broken, fill what wasn’t empty, correct what wasn’t incorrect. But we were and are still his parents, which means we have a relationship with him, which means we must choose what we will do and say in his company. We want to do and say what is best for him and us. We are not passive. But when we made choices that were in response to a threat that didn’t actually exist, we succeeded only creating a drama from which we all wished to escape. In this way, we were all pretending. If Sawyer’s behavior was a threat, then Sawyer was an enemy. Now, in our little drama we had an antagonist called autism that dwelled within our son, and it was impossible to tell where friend and enemy diverged. When an enemy has entered my home I will make one choice; when a friend is asking for help, I will make another. These two choices, clear as they might appear, often blur as quick as a thought can cross my mind. Fortunately, the choice of what I will believe always remains mine, just as my wellbeing remains unhurt by all the imaginary arrows I have dreamt.
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Today I am pleased to open this space to a special writing guest: my wife, author and illustrator Jennifer Paros. I cannot think of a better companion for the journey that is parenthood than Jen. I hope you enjoy this piece as much as I did when I first read it. Reality is the leading cause of stress among those in touch with it. ~ Lily Tomlin When my youngest son was three years old, at the suggestion of his concerned preschool teacher, we agreed to a state assessment of his “needs.” But after the evaluation, the specialist’s observations sounded like a scientific field log – as though she’d been in the bushes with binoculars. The subject thumped his chest repeatedly and ran back and forth. The more she shared, the clearer it was that the observed facts were only leading her further from understanding him. What I learned in the next round of evaluations was: if my son was disinterested in doing what was asked of him and opted not to do it, the observer concluded he was unable to do it. I learned that what he did at home, he wouldn’t necessarily perform during a test at school. I learned that the observer and the observed have an influential relationship on each other that affects results and data. And I learned that, though his behavior seemed to be the problem, observing, labeling, and trying to alter that behavior did nothing to serve him, because the focus wasn’t actually on him, it was on identifying what was wrong with him. I grew weary of the facts, and of the conclusions drawn from those facts. Beyond observation, there was something more important about my son and his story that would never be grasped through a pair of binoculars. I felt confounded by the contrast between my knowing sense of him and external evidence of his behavior. The process of “facing reality” was leaving me out of balance and feeling unstable – not because I had a son with a diagnosis, but because stability comes from the inside, and all my attention was on the outside. There is an exercise for improving one’s balance. It involves standing on one foot with eyes closed. This is challenging because a big part of what we usually use to stabilize ourselves is the visual field. This exercise, in which observation is eliminated, is said to build the greatest balance. It’s been my experience that the only true way to regain my emotional and mental balance and stability involves no longer trying to use external reality to stabilize me but in finding it within myself – eyes closed. Great art is the outward expression of an inner life in the artist, and this inner life will result in his personal vision of the world. ~ Edward Hopper If I think about how others might perceive what I’m doing – or me – I lose my footing in what I want to create. There is no quicker way to get confused in the creation of anything than to look outside us (reviews, “likes” on Facebook, editors, spouses, experts . . .). The guidance we need to create whatever we want comes embedded within our drive to create. No external feedback can ever be as relevant as our personal vision and feeling of connection to our work. This personal reality is the necessary litmus test for all incoming commentary, advice, or constructive criticism. We are the ones who know our (inner) worlds. It is up to us to align with those realities. And when we don’t, our equilibrium is compromised, for it is investment in our inner reality that balances our perspective on our outer experiences. J.D. Salinger, famous for his writing, reclusiveness, and dislike of publicity, said “There is marvelous peace in not publishing . . . Publishing is a terrible invasion of my privacy. I like to write. I love to write. But I write just for myself and my own pleasure.” Salinger didn’t like fame, the concept of which focuses solely on the attention of others; he didn’t want his attention out there, and so strove to block out anything that might inspire his focus to stray. In his way, he did his best to “close his eyes” to the world and find balance and stability from within. We don’t have to hide, protect ourselves, or seek externally to find balance. Balance is achieved through deliberate attention to our personal truth. It took me a while, but I came to understand that what was distressing me wasn’t the reality of my son’s behavior; it was my own lack of attention to the experience of my personal reality of him. The feeling of instability always cues us to close our eyes and find our center where it actually exists. The seed of what we want is present in here where the vision for our creative work – whether a project or a relationship – always exists first. A couple years ago I had the pleasure of interviewing Michael Neill on my weekly Blogtalk radio show Author2Author. Michael is a life coach, author, and all around inspiring guy. At the time I interviewed him he had just published The Inside-Out Revolution, based on his work with something called The Three Principles, which, among other things, connects how we feel and what we perceive to the thoughts we think.
When Michael came upon The Three Principals he was already enjoying great success. He had published two books and was a much sought-after teacher and speaker. But, like a lot of spiritual writers and thinkers, his journey to inspire and help others began with a desire to understand his own despair – which, in Michael’s case, expressed itself in periodic thoughts of suicide. In our interview he described how the techniques he had once used to deal with his despair seemed to do little more than stave off a waiting darkness. He said that during this period of his life, despite being married to a woman he loved and doing work he loved and for which he was generously compensated, he felt as though he was always two very bad weeks away from wanting to kill himself. Then he found The Three Principles, which taught him that there is a big difference between thinking you would like to kill yourself and actually wanting to kill yourself. This was a great relief to him because, as he said to me at the end of this story, “I realized I wasn’t broken.” Which is why this blog and the coming book are called No One is Broken. Michael is one of those writers and teachers from whom I have learned much. He’s funny, insightful, compassionate, and thriving. And yet not so very long ago he lived with the quiet and persistent thought that he was broken. I do not think he is unique. I think the persistent thought of brokenness follows everyone in sometimes quiet and sometimes very loud ways. I also think that there is nothing worse we could ever think of ourselves than that we are broken. I began all this when my son was diagnosed with what is called Autism, but I have long known that this work really has nothing to do with that word. Autism itself is just a thought, a word we invented when we saw some people behaving differently than we had expected. Yet just like a sentence on a page, a thought is either in service to the story of our life or it is not. If it is not, then it must go, and because it is nothing, because it has no teeth that can bite us or claws that can hold us, it can exact no revenge for its dismissal. It was never really here in the first place. I believe the thought of Autism is destined for this erasure. It has never served us, linked unconsciously as it has become to the concept of brokenness. It is not an evil word, however. It’s just a first draft of a thought, an impulse response to our fear that some of us are just not as good as the others. When it is gone, we will perceive the empty space reserved for the answer that we had been asking for in our grief and despair. That too had been following us, sometimes quietly, sometimes quite loudly, waiting for its chance to be heard above the din of an old and useless story. 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. |
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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