Shortly after my second son, Sawyer, was born, my wife, Jen, began experiencing some discomfort in her abdomen. Several trips to the gynecologist yielded no improvement, so an ultrasound was scheduled. On the day, I sat in the waiting room with my infant son while she was examined. As a young father, this was a familiar experience. Between my wife's pregnancies and then my two sons checkups and bruises, there were many trips to doctors’ offices where I found myself waiting and waiting, until I learned that everyone was fine and everything was going to be okay. Eventually Jen emerged from the examination room and sat beside me with a heavy sigh. “They found a growth on one of my ovaries.” “A growth?” She nodded. A growth. In my imagination, I quickly diagnosed this growth. It was cancer. And she was going to die. And I was going to raise my sons alone. I began picturing my life as a single father. It wasn’t going to be easy, but I would adjust, and everything would be okay. I had just finished this trip to the future when her doctor appeared and began explaining what an ovarian cyst was. Apparently an ovarian cyst isn’t cancer, but it can cause discomfort in the abdomen. I was still a little disoriented by it all, and once we’d thanked her doctor, I turned to Jen for clarification. “So you’re not going die?” She laughed. “Not yet.” Seven years later my son Sawyer would be diagnosed with autism. There were times during that period where I felt as if I spent half my waking life in waiting rooms. It was appropriate, I suppose, because the parent of a child with this diagnosis can live in a suspended state of unending waiting – not for news from this or that doctor, therapist, or teacher, but simply waiting for The Future, where autism’s true threat always lies. Because even though school was difficult for my son, and even though getting his attention at home could be difficult, and even though he wasn’t making friends the way other kids were making friends – ultimately, in the present moment, everything was okay. He wasn’t unhappy, at least not any more than I was sometimes unhappy or his brother and his mother were sometimes unhappy. In fact, he was often quite happy; he just found most of that happiness in the realm of his constantly active imagination. It was the very realm in which as a writer I’d found such pleasure, but as a father I often found much misery. Sometimes I would ask my imagination what The Future would look like for Sawyer, and because my imagination could not easily draw a line between what I was seeing in the present and what I wanted to see in the future, it showed me a dystopian world where for some reason Sawyer had learned absolutely nothing about how to get along with other adults. If I looked too long at that world, I would begin panicking in the world where I actually lived, as if that future had already arrived. I needed to do something immediately because everything wasn’t okay. The best thing I can do at these moments is always nothing. Every time I try to predict the future I am wrong, and I am never more wrong than when I predict tragedy, a dismal future where everything is not and never will be okay. The fear I have felt for my son is always quite real, but the cause of that fear is always imagined. Not sometimes – always. Just as when I take the time to look around at when and where I’m actually living, I eventually notice that everything and everyone are always okay.
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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. The biggest obstacle I encountered with Sawyer when he was much younger was the idea that there was a problem I needed to solve. The problem, as I saw it, was that his behavior – his talking to himself, his lack of participation in school and at home, his humming and flapping – was incompatible with society as I understood it. If it was incompatible, then he would never know success on any level, because success always involves other people in some way or another, and if he never knew success then I would have failed as a father and I would never be happy.
If something exists that can come between me and happiness then it is a problem. If I cannot be happy I do not much feel like being alive. Without joy, without enthusiasm, without curiosity, without passion, without love, without excitement, this experience called life is a dull, meaningless forced march toward the grave. In this way, happiness – in all its myriad manifestations – is my reason for living, and if something arises that can blot out the sun of my joy, life on Planet Bill will cease to exist in any meaningful fashion. Problems, you see, are threats to my very existence. Dramatic you say? Most definitely. But these thoughts occur quickly and quietly in my mind, and before I know what’s happening my son talking to himself in the grocery store stirs a fight or flight panic in my chest. Now, it’s every man for himself. Now, I am afraid, and all fear ever wants is for something to stop. Fear knows nothing about creation, only destruction. The choices I make while running for my life always lead me somewhere I do not want to be – because every choice is creative, whether I like it or not. Love, on the other hand, is all about creating on purpose. And love is the truth of my relationship to Sawyer, to myself, and to life all around me. Love never asks, “How can I stop that?” Love only asks, “How can I have more of this?” Love knows that the more I create of one thing, the less I have of another. The useful question, then, is always how can I have more of this that I enjoy? If I observed Sawyer paying attention to me or his friends or the world around him, I would ask, “There! He just did it. How can I help to bring more of that?” It may seem subtle, but the difference between asking, “How can I stop this?” and, “How can I have more of that?” is the difference between fear and love. It is also the difference between a world full of problems, and a world without problems; a world full of broken people, and a world without broken people. Love does not see problems. All love sees is more love. I do not always see the world through the eyes of love. Sometimes to do so seems irresponsible. A man must be vigilant, lest the hyenas of trouble creep up on his vulnerable world. When I look for problems, I always find them. They are everywhere, hiding in every shadow. The world, I have noticed, is full of shadows. My imagination can put anything at all in a shadow, can hide any thought, can tell any story, even though the shadows I fear are nothing but the trace of the movement of light. 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. 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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