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For the Love of Billy
By the age of two, Billy had grown into a beautiful, healthy-looking child—but he did not speak, play with toys or look others in the eye. Nor would he respond when his name was called, though the sound of a fire engine or the TV could get his attention. Billy’s pediatrician told Jackie and Paul not to worry. And there was the book they read, “Late-Talking Children,” which reassured them that boys who begin speaking late often become mathematicians, musicians and scientists. “We chose to believe our child was going to be brilliant,” says Jackie. Besides, he was such a happy child, his parents recall. When Billy was two-and-a-half, a developmental psychologist delivered the diagnosis: “Pervasive developmental disorder, not otherwise specified,” the term for a broad range of neurological conditions commonly referred to as autism. There is no “typical” autistic child. What all children with the disorder have in common, however, is their difficulty to communicate and socialize.
“Billy was brought into my life to teach me patience, tolerance and acceptance, all the things I kind of lacked in,” says Paul Colliton, 56, a commercial photographer. “He’s a beautiful guy with a beautiful soul. And every day it gets better and better.” Now a husky 10-year-old, Billy’s polite ways and gentle manner can melt the heart. He has moved beyond the worst phases of his condition, when he would spin and jump incessantly, bang his head against windows, and bite. But his social skills remain underdeveloped. He won’t play with other children and he still rarely makes eye contact. He needs supervision in public because his behavior is unpredictable. At home, Billy is a blur of frenetic energy. Talking to himself, he shifts from repeatedly rewinding a children’s video to searching for a song on his computer to reading one of his children’s books. Though he still can’t tie his shoes, Billy multi-tasks with ease. “Type ‘The Beach Boys’ and ‘Fun,’ Daddy,” Billy says, a hand resting gently on his dad’s back as Paul helps the boy do a YouTube search for the Beach Boys song, “Fun, Fun, Fun.” (The Beach Boys is Billy’s musical obsession of the moment. He draws them, writes simple letters to them, and listens to the group for hours on end.)
The small miracle is that Billy speaks. At age 7, Billy entered the Hawthorne Country Day School, a school for developmentally delayed children housed on two floors of a Catholic elementary school in Harlem. One of his teachers, Tomi Lyons, recalls that he spoke two words when she met him—“yes” and “popcorn.” “He did some signing, and couldn’t write at all. It was hard to know what he could do.” Unlike many autistic children, Billy seemed to want to communicate. He had previously learned some sign language and words would come to him from time to time, but then he seemed to forget them. Around his eighth birthday, something clicked and, gradually, he started to speak in sentences. “That almost never happens,” says Lyons. “If the kid isn’t talking by a certain point the chances of him being as verbal as Billy are almost nonexistent.” Billy now reads on a 3rd grade level, his teachers say, and he writes in large capital letters. On a recent excursion to Borders on lower Broadway, Billy sits on the floor in the children’s section, quietly reading aloud from a picture book. He puts the book back and takes another, first smelling it. “He likes to smell the books when they’re new,” says Jackie, 55, an interior designer, as she stands close by. “He likes to smell my hair. And sometimes if there’s somebody next to him who just shampooed their hair, he’ll just start sniffing them and they’ll be like, ‘What are you doing?’”
“Mommy, I want to find the Beach Boys CDs,” Billy tells Jackie. There is a brief exchange between them, and Jackie’s face brightens. “We could never have these conversations,” she says. “These are brand new conversations, back and forth.” Billy picks out several CDs and his usual quiet demeanor turns demanding when he is told he can’t have them all. “No, I want to buy it now! Now! Now! No, I want to buy it, please!” “That’s $25,” his father tells him. “Yes,” Billy replies, now sweetly. “What should we do?” Walking home (with his new CDs in hand), Billy dashes into a women’s shoe store, and Jackie races after him.
“Everything is from a video that he’s seen,” Jackie explains. “He was reenacting a whole scene where someone goes into a shoe store. He always wants to be part of it.” Jackie and Paul are used to this kind of behavior. “I don’t feel embarrassed,” Jackie says. “I feel stressed because I have to quickly decide how I’m going to redirect his behavior. I can try to have control over him. I can’t control other people.” Paul says he used to get angry at strangers who recoiled at his son’s unpredictable behavior. “I thought, ‘Hey, man, what’s the matter with you?’ Now, I’m like, that’s their problem. I just see them as being uptight.” In a crowded subway car on his way to gymnastics at Chelsea Piers, Billy talks to himself and fidgets beside a woman who is reading. After a couple of glances in his direction, the woman moves away. As Jackie and Billy exit the 23rd Street station, Jackie admits that the reactions of strangers can still hurt. “Sometimes Billy used to put his head on people’s shoulders and get into people’s space,” she says. “But I didn’t think the woman [on the subway] had to move. It shows so little tolerance.” Billy has come far since the days when his parents had to be on constant alert, making sure their son didn’t hurt himself, or others. “I used to envy those fathers who could sit on the park bench and read the newspaper and say, ‘Hey Johnny, get off that tree.’ Not me. I had to be like an arms length away from him.”
On a few occasions, Billy’s behavior has led to ugly confrontations with other parents. There was the time he was playing in a park when he became fascinated with a little girl’s skirt that was fluttering up in the wind. “He went over to her and fluffed her skirt up because it was a lyrical kind of playful thing,” Paul recalls. “Her father came over and slapped him across the face. He said Billy was trying to molest his daughter.” Paul also remembers the day at the Rockefeller Park playground when Billy tried to bite a slow-moving boy who was climbing ahead of him on a ladder. Paul was locking his bike and couldn’t stop him in time. “The mother could have just pulled her child away,” Paul recalls, “but instead she leaned over the child and smacked Billy in the face. She called him an animal and said I should keep him locked up.”
Despite Billy’s progress, his future, like that of most autistic children, is uncertain. “That’s the part we don’t like, the future,” says Jackie. Paul agrees. “I can’t get sick, I can’t get old. If something bad happens to me, what’s going to happen to him? That’s the thought that’s creeping into my head now.”
Along with the individual attention he is given at the Hawthorne School, Billy’s schedule is filled with occupational therapy and speech therapy and special lessons in gymnastics and swimming. And they do it all, Jackie and Paul insist, without an ounce of regret over that evening, 11 years ago, when they plucked an unwanted infant from a home of despair. “I honestly feel happy that I did not get pregnant,” says Jackie. “Because now that we have Billy, I wouldn't want it any other way.”
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