My Son Zachary

He was born weighing just one pound, 11 ounces. Unlike his twin, he was cheated of oxygen. As Zachary turns 16—an age he will never attain mentally or emotionally—his father wrestles with all that love can't conquer.

THERE IS A blue file drawer at home, and stuffed in it are all the reports that have been written about Zachary, efforts at specific diagnosis. They have come over the years from psychologists and neurologists and psychopharmacologists and educational specialists. It was suggested that he suffered from a form of Tourette’s syndrome. It was suggested that he had a mild form of autism. It was suggested that he was having seizures. It was suggested that he had attention deficit disorder. He was given an extensive array of tests, both medical and academic. His IQ was shown to be 64, with a verbal score of 76 and a performance score of 55, which, in our endless obsession with categorization, would place him in the range of being mildly mentally retarded with borderline cognitive functioning.

Perhaps the only thing doctors have agreed on over the years is that Zachary suffers from pervasive developmental disorder, which in layman’s terms means that he lags behind in virtually every measure of developmental performance—the ability to comprehend anything remotely complex, the ability to develop any kind of abstract thinking, the ability to develop proper social behavior beyond simple questions and answers, the ability to learn without intensive and repeated one-on-one interaction.

“This is an extremely complicated situation which is the consequence of brain injury from prematurity,” concluded Dr. Lawrence Brown, a superb neurologist at Children’s Hospital of Philadelphia, in a report he wrote in 1992, after examining Zachary. “It has been variously described as pervasive developmental disorder of high functioning, but there are no autistic features, and the behavioral disorders, learning disabilities, and cognitive function suggest very severe learning disability, attention deficit disorder and probable borderline cognitive functioning.”

Zachary’s case is complex in part because this is a common characteristic of children who are born prematurely, but also because the brain, quite beautifully, I believe, steadfastly refuses to yield all its mysteries regardless of how many scientists probe its spongy mass. For all that Zachary cannot do, for all the dependence on the same rote conversations over and over—what are you wearing, where are you going, what did you have for dinner— there are things he can do in ways so spectacular, they defy explanation.

He is a reader of maps to the point of obsession. For hours on end, alone in his room, he studies them, and—so unlike other areas of learning—he retains almost-perfect knowledge of them. He knows the names of virtually every street and avenue and boulevard and intersection in Center City and Chestnut Hill and Mt. Airy and Manayunk and parts of North Philadelphia, and now he is working on Chester County. His recall is astounding, to the point where he can lead anyone in the metro area to virtually anyplace they want to go.

His memory for dates, like that of Dustin Hoffman in Rain Man, works with
the same kind of eerie brilliance. He can recall not just events from five or 10 years ago, but their actual dates—birthday parties, dinners, lunches, chance encounters on the sidewalk. He also can tell the precise day on which an event will occur in the future—Christmas in the year 2002, my birthday in 2003, my friend Fen’s birthday in 2001.

At a certain point, there was something thrilling about these abilities in terms of what they might mean for him in the future. His ability to snatch up dates and retain the minute squiggles of those maps suggested to me that he was a sliver away from normal progression, that his brain, like the engine of a car, only needed the slightest adjustment of spark and fuel injection to idle and purr and propel.

There was something wondrous in there, a rare and beautiful mind, if only we could somehow get to it.

From the time Zachary was two until he turned 10, I rode the circuit of doctors and psychologists and psychiatrists with regularity. I answered the requisite questions, told how he had been born 13 weeks premature, weighing one pound, 11 ounces; how he had been unable to breath completely on his own until he was two and a half; how he didn’t start talking at all until he was the same age, how he had no physical problems such as cerebral palsy. I watched them nod and then begin their examinations.

He was a beautiful boy then, with skin that was plush and eyelashes as long and delicate as butterfly wings. He was friendly and had a soul of innocence, and he tried, tried so hard. But it didn’t take long before he became bewildered. And I realized that for all his affability and grace and desire to please, he was what he was—a child of wildly scattered skills that could never be fully explained cognitively, a child of brain damage. As he got older and stepped into adolescence, I stopped riding the circuit of medical experts, not out of neglect or carelessness, but because it all seemed so painfully futile.