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which was replaced by the VCR. Before long he’d doubled his working vocabulary, grunting “Elmo” (actually, “Uh-mo”) until I caved.
    That summer there was another significant development: Luke finally had a proper diagnosis. He has, we learned, a syndrome called Fragile X, a single-gene mutation at the base of the X chromosome that wreaks a range of nervous-system havoc. That flawed gene, identified in 1991 through an outgrowth of the Human Genome Project, fails to make an important protein that regulates other proteins in the brain. No one knows the exact function it serves, but without it key brain cells develop abnormally and their ability to send their signals is impaired. Physical manifestations are, for the most part, innocuous (long faces, prominent ears, and in males, enlarged testes), and kids so afflicted are usually otherwise healthy and can expect to live to old age. But the effect on developing brains is profound, a cure through gene therapy is decades off, and a promising class of experimental drugs is just now entering human trials. For the estimated 90,000 sufferers in America alone, relief is years away.
    In its mildest, which is to say rarest, form, Fragile X causes modest retardation and a host of social dysfunctions: shyness, slurred and/or repetitive speech, and obsessive-compulsive behaviors, to name just some. In the middle range, those symptomsare more pronounced and often appended by neuropsychiatric woes: panic, phobias, sleep disorders, and severe overreactions to bright light and loud noises. And then there are the kids in the bottom bracket whose nervous systems are under sensory assault. Picture having to live in a video arcade with the volume and wattage up full, where everyone around you is racing past, speaking Mandarin at the top of their lungs. Your shirt feels like Brillo, your shoes like cement, and the breeze on your skin like the thwack of a soaking towel that’s been left to chill in the fridge.
    That, in a nutshell, is my little boy, who, like many of his profoundly affected peers, has autism, epilepsy and an IQ we can’t measure because he can’t, or won’t, follow instructions. He is months or possibly years from being toilet-trained, eats with his hands and has no capacity to tie his shoes, though he is Harry Houdini himself at getting out of them.
    We have tried (and tried) to ease his symptoms with all the conventional treatments, but have gotten very little bang for our hard-earned bucks in speech, occupational and physical therapies. The only thing that’s helped, and that just barely, is a mix of powerful drugs: Luvox for mood swings, Abilify for attention-deficit problems and Trileptal for seizure disorder. Forty years ago most kids like mine were raised in institutions. Luke may still wind up in a residential school, coming home to Elaine or me on weekends. For now, we’re doing all we can to fend that off, day by day.
    One night, after an hour of ritualized groveling to get Luketo sleep, I collapse on the couch to watch TV. Spinning the dial, I happen upon a profile of a man named Izzy Paskowitz. A goateed, lion-maned surfer who was a longboard champion in the early nineties, Paskowitz runs a bustling surf camp on the beaches of San Diego with his wife Danielle and several of his eight siblings. He and Danielle also founded something called Surfers Healing, a series of traveling one-day surf camps for autistic children. He has a kid so afflicted himself, a boy named Isaiah whose development was normal till he woke at eighteen months “changed totally.” His language was gone, he became agitated and began throwing tantrums that were hard to quell.
    Paskowitz, whose father was a champion surfer and who had planned on passing the mantle to his son, handled the situation badly for a time. He went out on tour and stayed there for months, living the hang-ten high life of twelve-foot waves and too much to drink. Returning from the road, he found his wife at her