Ask any parent of a child with a disability and you will usually get an earful about the all-encompassing uncertainties that accompany having a son or daughter with “special needs” (to use that politically correct catch-all phrase). These parents are acutely aware of the fact that — in its brutal, happenstantial way — life can suddenly deal you some very bad cards. Only retrospectively — many years down this track — do you also begin to realize that how you, the parent, grapple with this determines so much of your child’s future.
I was a late arrival at that station marked parenthood. When Max showed up in the world I was a 37-year-old American writer based in London, married to an Irishwoman in the film business. Though there was a moment of panic in the delivery room when a midwife discovered that the umbilical cord was wrapped around his neck, Max hit all his early developmental marks and seemed to be a cheerful, engaged baby with decidedly night owl tendencies.
But then, when he was three, his connection to the world around him gradually began to diminish. Our growing worries were magnified when the head of his kindergarten called us in to observe him sitting alone in a corner of the playroom, withdrawn from his peers, staring blankly into the void beyond the nearby window. A briskly clinical educational psychologist diagnosed him with a receptive language disorder, meaning he had trouble understanding and processing what was said to him. She mentioned a private school that — as she noted in her crisp, bloodless Anglo way — “specializes in these sort of things.”
On the recommendation of that cheerless diagnostician, Max spent two years at a posh, rather useless school for children with language disorders in a leafy corner of South London. Not only did he make no progress during his time there, but the headmistress once dismissively told me: “Max’s prospects are simply limited. At best he will be happy within himself.”
After this conversation I started frantically researching other educational possibilities. And then, out of nowhere: Disaster. Max developed a series of nervous tics. He had tremors that left him disoriented and confused. I brought him to a pediatrician who said Max had Attention Deficit Disorder and put him on a course of Ritalin.
Ten days later, while my wife was on a business trip, I walked into Max’s room to discover that while he was physically present, he wasn’t responding to any outside stimuli. When I called his name, when I took his face in my hands and begged him to answer me, he stared back at me with eyes as glassy as a lake in winter. He was a vacant shell.
Lifting him, I discovered that he had lost control of all bodily functions. I raced him into the bathroom, washed him down with the shower hose, then called the local children’s hospital. Minutes later I was negotiating rush hour traffic. Halfway to the hospital Max was hit with a convulsion that lasted one long terrible minute. Seated next to him, in her child seat, his two year-old sister Amelia stroked his head with her left hand, willing his seizure to stop.
When we reached the pediatric neurology ward, my son was hooked up to an EEG machine to measure his brain waves. When the EEG machine whirred to life — Max’s head now covered by twenty electrodes — the needles on the monitor went berserk. It was like a mad Jackson Pollock canvas mirroring the electrical activity in my son’s brain. The resident neurologist was on the scene moments later. His voice remained calm, level, as he told me: “Your son is in the throes of a very severe epileptic incident. I know it is frightening, but in most cases the child comes through this.”
In most cases. This qualification unnerved me. He sent us across town to a specialist he felt best equipped to handle this “incident.” An hour later I was in the consulting rooms of another doctor. He walked in as I was holding Max down during another convulsion.
After studying him intently, the doctor crouched by my catatonic son and said: “So Max, how does it feel to have taken five years off your father’s life?”
Then, gripping my shoulder with his hand, the doctor said what I was longing to hear: “I think I can get him back.” That doctor became both my ally and friend. Especially as it took another three months and many pharmacological adjustments for Max to emerge from his walking coma. When Max could talk again, the doctor sent him one of England’s top experts on autism, who officially diagnosed Max as being mid-range on the autistic spectrum.
After that, the wife of a friend put me in touch with a fellow American in London who was the mother of two autistic boys. She introduced me to a controversial way to teach autistic children that was pioneered at UCLA by Norwegian psychologist Ivar Lovaas. Known as the Lovaas Method, it also goes by the name of Applied Behavioral Analysis, and is noteworthy for its brutal 40-four hours per week one-on-one therapy that reportedly reorders the autistic brain.
With my friend’s help I set up a Lovaas school for Max at home. And thus began the process which saw him accepted, 14 years later, at Ringling College of Art and Design. It was a frequently arduous journey. The early months of the therapy saw Max howling his head off as the chief tutor began to chip away at his autism.
I had to fight to get Max into the one secondary school for autistic children in London — and then had to fight again when our local borough closed it down (nasty budgetary cuts). I had to fight to get him into one of the few state boarding schools in the United Kingdom for autistic children. But then it was Max who insisted — when a teacher suggested he consider vocational training — that he wanted to get the British equivalent of a high school diploma. And it was Max who said yes, three years later, when I asked him if he was ready for college.
When it came time to start the college admissions process I was a divorced man living back in the United States. It was Max who, without my help, wrote a remarkable essay entitled ‘My Life with Autism,” which accompanied all his applications. Ringling was his first choice — and Ringling was the first of four schools that said yes to him.
Three and a half years on, Max came to visit me in Manhattan for Thanksgiving. He grabbed a taxi in from JFK International Airport alone, checked himself into the hotel I arranged for him, walked alone to my home and went with me and his sister to four plays over the weekend (we’re all culture vultures).
He especially had many things to say about “A View from the Bridge” on Broadway, which he pronounced brilliant. He asked, “Do you think Eddie Carbone knows he is writing his own destiny? That’s the Greek tragedy part of the play, right?” I thought back to that dismissive headmistress in London who told me that Max’s future would be, at best, limited. And I said to my son — all of whose extraordinary achievements are tribute to his fierce desire to defeat the autism that so tyrannized him for years: “Writing your own destiny can also be a wondrous thing”.
Douglas Kennedy’s 12 novels include “The Big Picture,” “The Pursuit of Happiness,” “The Woman in the Fifth” and “The Moment.” His new novel is “The Blue Hour.” A native New Yorker, he now divides his time among Manhattan, Maine and Paris.
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