When my son was sixteen years old, he did the Shark Fest Swim. Alcatraz to the wharves of San Francisco. One and half miles in cold, turbulent, shark infested water. I shivered and quaked at the thought. A year later, he and his high school swim mates did The Catalina Relay. Twenty odd miles from Catalina Island to the Pacific Palisades, at least half of it in the dark. I still get seasick thinking about it. He certainly didn’t. He was in the water at dawn, surrounded by herds of dolphins. The boat captain said he’d never seen anything like it. Later that year, he and his fellow team members did a relay across the English Channel. Water temp – 54 degrees, no fins, no wetsuits, stinging jelly fish, heavy currents, and industrial freighters. It worked out that he was the swimmer who touched the shore of France, barely evading the embrace of an enthusiastic Frenchman, a celebration that would have disqualified the entire team. You’d think he might have shouted a warning, but he didn’t. He wouldn’t. My son – ocean swimmer, surfer, and eager skin diver – is on the autism spectrum and can have a difficult time talking to people, especially those babbling loudly and exuberantly in a foreign language. Thankfully he hurried up and onto the beach and disaster was averted. Such is life for those who don’t work like – quote-unquote – normal people. Success can be one step away from mishap. Normal people, even well-meaning ones, can throw you because they move and talk faster than those who measure twice – sometimes measure three or four times – and then carefully cut once.
In my novel, The Practical Navigator, the protagonists, Michael Hodge, is a single father dealing with the news that his son too, is on the spectrum. The boy, Jamie, is six and in many ways Michael’s experience reflects that of my wife and my own, some fifteen years ago. The initial shock at the diagnosis. The fear. The uncertainty. We hardly knew what autism meant and what we read seemed ominous. What do we do? Where do we go? How do we help him? We had no idea. But we slowly learned. We found people and services. We learned about occupational therapy. Speech therapy. Floor time exercises. All of this seemed to be in its infancy then. We had no idea if any of it was even helping. All we saw were challenges.
My son gravitated early on to the swimming pool. He loved the pressure of the water on his body. He liked going to the rock-climbing gym and because we were told it was good for his coordination, we went as often as we could. I enjoy tennis and golf and would take him with me when he’d let me. A favorite story. My son was about nine and we were playing an easy local track. On the first hole, he hit a short, straight drive and as he approached the ball, he pulled a lob wedge from his small bag of clubs. It was at least one hundred and fifty yards to the pin, fifty to clear a fairway bunker. “Wrong club, Bub,” I said. “Dad,” he said, “it’s my decision.” “You want to at least carry the bunker,” I insisted. “Dad,” he repeated, “it’s my decision.” I shrugged and watched as he hit the ball into the bunker. Four or five or six shots later, he was on the green, calmly putting out, when it hit me. “Dude, you do know you’re trying to get the ball into the hole in as few shots as possible?” He looked at me in surprise. “Really?” he said. “But – why? – it’s fun to hit the ball.” It’s something I’ve tried to remember on the golf course ever since.
My son’s elementary school was a warm and nurturing place. It was close to home, and he was surrounded by supportive teachers and typical peers. We supplemented his studies as best we could with aides and outside tutors. Looking back, we probably could have done better in the academic department. At the time it though, it seemed more important that he be comfortable, secure, and accepted for who he was and frankly, we had no idea where else to go. His first middle school experience was a disaster. It was a private school for “students who struggle” and it promised highly trained teachers and research-based learning strategies. After one unhappy, anxious, defeating semester with far too much time spent alone, sitting in the principal’s office because they didn’t know what to with him in class, we took him out. We explored public school options which increasingly seemed wrong for him. They gave little and they expected little of him. We were then lucky enough to find a district affiliated school in San Diego, a school where, we were told, there were “no labels, no excuses”, that it was “life on life’s terms” and the school motto was – is – “I will either find a way or make one.” Students mentored one another and when my son found himself in one-on-one situations with peers he wasn’t comfortable with it at first. He was expected to focus on a college bound course of academics and he struggled. Math was difficult but doable. Literature was a nightmare as my son doesn’t think in words, he thinks in pictures. When asked which foreign language he wished to study, he requested Tagalog, the national language of the Philippines. He was disappointed when told it wasn’t on the curriculum. He was asked to do culminating presentations on his course work, and they were mono-syllabic and he spent most of the time staring at the floor.
But three times a week he and his schoolmates swam. First in a YMCA pool, not far from school and then, when other members complained about the “weird kids”, in the ocean where the “weird kids” often scared the lifeguards half to death, hitting the high surf and swimming a mile out to sea at six-thirty in the morning, no one ever dreaming that in several years the “weird kids” would all be swimming the English Channel together.
Four years later, as he approaches the end of high school, my son still has his struggles with math and it’s doubtful he will ever be a literature major, but he has become a competent and dedicated student. Rather than Tagalog, which he has vowed to learn on his own, he opted for a semester of Spanish. And as for those presentations, he now gets up, looks everyone in the eye and speaks with confidence and authority. He talks about being a lifeguard, he talks about being a marine biologist, he talks about studying snakes and poison dart frogs. He talks about the kind of house he’ll have some day. He likes the idea of bright colors and round, Hobbit doors. With the help of a service dog, he’s achieved a level of independence. On weekend walks, he’s made friends in our small town. Local merchants. Wait staffs. The guys who play pickup basketball at the park on Saturday mornings and of course, the members of the local swim clubs. They all enjoy him, and they look out for him. My son has come to a place where he rejects any imposed limits that come with the label of autism spectrum, and I am so proud of him for it. And yet I worry. All I still see are the challenges. If the first hump to get over as a family was the initial diagnosis and the obstacles my son would face as a boy, a teenager and then a young man, the second one will be those he faces as an adult. It can be hard out there for everybody, but it can be especially hard for those that are considered – and again, it should be in quotes – “different”.
In a recent New York times piece, the columnist, David Brooks, points out that we, as individuals, “want to go off and create and explore and experiment with new ways of thinking and living. But we also want to be situated — embedded in loving families and enveloping communities, thriving within a healthy cultural infrastructure that provides us with values and goals.” Brooks says we look to create a contract with society through work and service and we look to create a covenant with our families, friends, and communities through love. Contract and covenant – my son wants both. Will there be a job for him studying poison dart frogs? Probably not. We have no idea yet what his calling – his contract with society – will be. More important, will there be relationships and a family – a covenant – not of origin, but of his own making? There are no courses or schools or programs for that, at least none of I’ve heard of. I do know my son is long on love.
I tell myself I’m not alone. I tell myself that all parents want the very best for their children, want them to be secure, happy, and fulfilled. I tell myself there are times when no parent has the right answers. I didn’t when my son was six and I don’t now that he’s twenty. I can only tell you this. At a recent fundraiser for autism awareness, my son had the opportunity to go up on stage and in front of several hundred people, he answered the questions put to him with confidence and authority. He talked about his swims, and he talked about his dog, and he talked about his school. And when asked what he wanted to do next, he smiled and replied – “Go to college, get a good job and marry a pretty girl.” The audience erupted in laughter and enthusiastic applause. I did too. Yes, I thought. From a young man’s mouth to God’s ear.
- Written in 2017
My son is now twenty-five years old. He works thirty hours a week at a local market, and he volunteers at the Scripps Institute of Oceanography here in La Jolla. He still hits the ocean several days a week, usually bodysurfing and he is a banjo player, a singer of songs. He still hungers for a “real” career but isn’t sure what that career will be as yet. More than that, he yearns for connection. With peers. With a romantic partner. It isn’t easy these days, we tell him, not for anyone, even quote-unquote normal people. But give it time. It will happen. Don’t lose hope.