The call shook me out of my usual afternoon daze. It was 3:48. The wife: “The boy locked us out of the house!”
“Are you kidding?” Dumb question.
“I ran outside to get the girls, and he ran into the study and shut the door!”
“So he’s still in there?”
“Of course—he’s standing at the window looking at me!”
We call our son Billy Boy. He’s 12 years old and as tall as his mother, but his speech consists mostly of “mama” and “da” and “buh,” for Bruce Springsteen, his favorite being on Earth. He is what is referred to as intellectually disabled, and he’s physically disabled, too. He still clomp-clomps when he walks, whether or not he’s wearing his leg braces.
He can’t work a TV remote or read or dress himself. Using the toilet is hit or miss, so he wears a pull-up diaper. He drools. He has what doctors call dysmorphic features, so people stare. The good news: no helmet.
Over a decade ago, my wife and I thought we’d be unable to conceive a child, and we adopted two baby girls a year apart. Then, just after the girls were out of diapers, my wife became pregnant.
Of the estimated 4.6 million Americans with some form of intellectual or developmental disability, more than 80 percent can live on their own with minimal assistance.
When Billy Boy was born, I knew something was wrong. His eyes looked huge, and he had little control of his limbs.
As the months passed and Billy did not develop as he should, doctors could find no single syndrome that matched up with his symptoms. Diagnosis: M.R. Mental retardation. Or intellectually disabled.
Of the estimated 4.6 million Americans with some form of intellectual or developmental disability, more than 80 percent can live on their own with minimal assistance. The rest cannot live independently. It is in this latter group that Billy Boy will likely remain.
Before we had kids, my wife and I were at a diner one night and saw an elderly couple with an intellectually disabled adult son. The parents looked so gray and withered. I thought, Jesus, what kind of life could they have? Now I know. You fix what can be fixed. Sometimes your heart breaks. You get over it.
One curious thing is common to many kids like my son: an irrepressibly charming personality. Billy Boy enjoys nothing more than laughing and making others laugh. Three Stooges-style slapstick, or someone stubbing a toe, reduces him to tears. Even before he could walk, he discovered he could make me laugh, too, from my gut—deep, life-affirming laughter. He’ll make faces, throw punches in the air like a boxer, mimic his sisters.
Part of every parent wishes his kids would stay babies forever. Billy Boy will stay a baby forever. I’ll never have to worry about him drinking and driving or getting a girl pregnant. I’ll never have to explain to him that the world can be a terrible place. He’ll always believe in Santa Claus.
Of course, that’s the hell of it, too.
When my wife and I are dead, our son will be dependent on strangers who will look after him not because they love him but because it is their job. Most people dislike their job.
We’ve come a long way since the 1960s, when thousands of Americans with mental retardation were warehoused in large compounds under terrible conditions. Between 1975 and 2011, the number of Americans in such institutions fell from more than 124,000 to under 30,000. Small residential settings are now standard.
But things are hardly ideal. Direct-care workers earn under $12 per hour on average. A 2011 New York Times investigation found “widespread problems” in over 2,000 state-run homes in New York, including employees “who sexually abused, beat or taunted residents.”
Such stories keep adults with severe intellectual disabilities—over 70 percent of them—living with family caregivers.
My wife takes Billy Boy to speech therapy and physical therapy. She also gets him ready for school every day, brushes his hair, tells him how handsome he is. He smiles and smiles. He loves school. Sometimes, if he’s in a bad mood, he pitches a fit when he comes home, but she is a Jersey girl and abides none of his crap.
“So he’s at the window looking at you?” I asked her that day on the phone.
“Is he upset?”
“No,” she said. “He’s laughing.” That’s my boy.
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