The Boy Who Loved Too Much Page 5

  But months passed, then years, as stages came and went in the lives of Eli’s peers. He didn’t catch up.

  At day care, while other kids babbled and chattered, Eli gestured wordlessly, pointing at what he wanted (pinwheels and the propellers of toy planes, primarily) and crying or flailing if he didn’t get it. He didn’t even produce nonsense syllables, apart from the repeated sound “dee.” “Deedeedeedeedee,” he’d say, but his inflection was flat, whereas even the youngest children in his day care could modulate their voices to mimic the inflections of conversation.

  For years, Eli’s communication was limited to eye contact and touch. These he used to great effect, at least with adults, whom he drew in by smiling at them and holding his hands out for a hug. If this didn’t work, he’d simply toddle over and wrap himself around the person’s legs. Seated people were often surprised to find him crawling onto their laps. It didn’t matter who they were: he’d hug a stranger as eagerly as he’d hug his grandmother. He catapulted himself into the arms of a schoolmate’s mother one day and climbed into the lap of a burly man at a shoe store the next.

  Gayle waited impatiently for Eli to start talking, willing him to reach this next developmental stage before everyone else his age shot too far ahead. Meanwhile, strangers marveled at Eli everywhere he went, complimenting Gayle on how cute he was. “Not shy at all!” they’d proclaim. Sometimes they’d call him precocious. Gayle bit her tongue, knowing that, because of his small size and babyish features, they thought he was two or three when he was actually four or five.

  She tried to introduce him to the life she had imagined for her child. She took him to the playground, where other kids flew down the slides, rocketed across the monkey bars, and launched themselves high on the swings. She already knew that Eli’s low muscle tone and poor dexterity—symptoms of Williams syndrome—meant he couldn’t do these things. She could have lifted him to the top of the slide and let him go, but he would have coasted down limply and probably landed face-first in the sand. Still, she wanted him to be there with the other kids, to share in this fundamental childhood experience.

  Eli didn’t seem to feel that he was missing out on the playground equipment; he was more interested in the people. By five, he had mastered the word “Hi,” and he felt compelled to greet everyone at the park, chasing them down, shouting “Hi! Hi! Hi!” But his single-minded focus, and the poor spatial perception that is another peculiarity of Williams, often put him in harm’s way. Invariably he’d stand too close to the swing set, oblivious to the danger, and Gayle would have to race to grab him before he was knocked to the ground.

  When he shouted “Hi,” the other kids tended to stop in their tracks and stare at him. Gayle could see that other five-year-olds found his behavior puzzling. They seemed unsure how to respond. Often they turned and ran from him. Even before reaching school age, they’d already acquired a sense of what was socially appropriate—and knew that this was not. Whether their awareness was innate or conditioned, they all reacted to the outsider in their midst the same way: by avoiding him.

  Gayle stopped bringing him to the playground.

  * * *

  FOR SEVERAL YEARS AFTER ELI’S first appointment with Dr. Pober, Gayle couldn’t talk about Williams syndrome without breaking down in tears. Some mornings she would wake up to a fresh wave of sadness, as though she were learning the diagnosis for the first time. She would open her eyes and feel a vague heaviness, a generalized dread. It felt as heartbreaking after a year as after a day. She started taking antidepressants.

  She couldn’t curb the nagging question: Why me? Why did I have a child with Williams? She started taking antianxiety medication. For a while she and Eli both took the same prescription. His, in lower doses, treated his hyperactivity and repetitive behaviors: rocking back and forth, kicking his legs, picking the skin around his fingers. Hers treated her endless worry for Eli’s safety, and for his future.

  After learning that their son had a genetic disorder, both she and Alan worried that they had caused it somehow. Alan blamed the various drugs he had experimented with in the past. Gayle wracked her brain for any bad karma she’d accrued, or—more practically—any family history of intellectual disability. But none of it could have given Eli Williams syndrome, as they later understood. This was some consolation, but it still left the question unanswered: why them?

  Gayle and Alan separated when Eli was eight. And although some studies have reported astronomical divorce rates among parents of disabled children, Gayle didn’t blame Williams syndrome for the split. She didn’t like to talk in detail about the divorce, which left her as Eli’s sole provider, with full legal and physical custody. But she believed she and Alan just became different people over time, and probably would have grown apart regardless of the challenges of raising a son with special needs. While he was in the picture, Alan was loving and patient with his son’s developmental delays.

  After the divorce, Alan’s presence in Gayle and Eli’s life was largely limited to the pages of the scrapbook Gayle had begun when Eli was a baby—a book that had since been relegated to a box in the garage, behind the Christmas ornaments. The early pages show a young couple embracing the joys of parenthood: cradling Eli at his first Christmas, picking pumpkins with him as a toddler, posing with him next to Big Bird at Sesame Place theme park.

  In later pages, their smiles look plastered on—more noticeably so in contrast to the thousand-watt grin of their chipmunk-cheeked child. A page from the year before their divorce shows Gayle with Alan at a hard-core hip-hop festival. Alan, by this time, was a die-hard devotee of the genre; Gayle was not, but tried to be supportive. In the photo she smiles thinly, her face puffy (a side effect of antidepressants) and her eyes red (a side effect of, well, depression).

  The scrapbook ends here. In fact, it can’t accurately be described as a book. It remains a loose collection of laminated pages, never bound together. Gayle gave up on the project, which lost its charm after her marriage dissolved and the family shrank to two. In any case, she was too busy taking care of Eli to bother with bedazzling its block letters.

  * * *

  BY THE TIME GAYLE BECAME a single mother, she had a good job with a large insurance company, evaluating policies and calculating risk. Without a college degree, she’d worked her way up from a clerical position on the strength of her work ethic and sharp intelligence.

  Highly conscious of the image she projected to the world, despite her nonconformist tendencies, she recognized the value of fitting in. She chose her outfits carefully and always woke up early to devote ample time to her hair and makeup regimens. For work, she skipped over the concert T-shirts in her wardrobe to pick twinsets instead. She covered her tattoos. Her hair hid the discs in her earlobes.

  She was no longer quite the “bigmouthed bitch” she’d been called—and called herself—in her youth. Her reputation was so deeply rooted, however, that when a cousin of hers was feuding with some of the other moms in her daughters’ dance program, and felt nervous about facing them when she picked the girls up after class, her husband said, “Bring Gayle with you. She’ll take care of it.” Gayle had to remind them that she hadn’t been in a fight since high school, and most of those weren’t very physical. She could usually get out of a scrape with a few well-chosen insults and intimidations.

  But her family and her oldest friends still saw her as the teenager who teased her hair high and slathered on thick eyeliner and purple lipstick. They pictured the girl in the Catholic school uniform who snarled, “What are you lookin’ at?” whenever someone gave her a sidelong glance. They thought of her as the girl the nuns busted for smoking, the one who routinely got detention for pushing her knee socks down to her ankles. They remembered the girl who got kicked off a city bus for fighting.

  Gayle had resisted authority especially, refusing to blindly obey rules she didn’t agree with. And although she had already mellowed and matured by the time Eli was born, the irony wasn’t lost on her that his disabilit
y forced her to work with the authorities, on whom she depended for his services. Diplomacy and tact became well-honed strengths. But that didn’t mean the bigmouthed bitch was no longer within her. That part of Gayle lived alongside the responsible part, the professional who knew how to play by the rules. In battling bureaucracy on Eli’s behalf, whenever diplomacy failed, the bitch was back.

  Although she was raised Catholic and educated at parochial school, Gayle had never been devout. After Eli was baptized, she never stepped foot in church again. Still, she believed in an order to the universe, a reason things happened. Looking back at her initial dismay that Eli’s disability would cramp her rock-and-roll lifestyle—that her son might not grow up to be cool—Gayle cringed at her own shallowness. Who, God or otherwise, would have entrusted that tough-talking young woman with the care of this uniquely vulnerable little boy?

  She sometimes thought of her sweet, cheerful son and almost couldn’t imagine how their paths had crossed. It seemed like a cosmic clerical error.

  * * *

  AT SEVEN, ELI SUDDENLY BEGAN speaking in sentences. One day he was barely verbal; then, almost overnight, he seemed to have grasped the English language in its entirety—vocabulary, grammar, inflection. By this time, however, Gayle no longer took it as a sign that he would beat the developmental odds. She couldn’t identify the exact moment when that hope slipped away. Every time Eli mastered a new skill, belated as it was, Gayle had been thrilled. Some part of her still hadn’t stopped collecting evidence against his diagnosis, long after she’d carried the envelope full of photographs to her first appointment with Dr. Pober.

  But, every time, she butted up against the truth: the pace of Eli’s development almost perfectly matched Dr. Pober’s projection. He wasn’t catching up. He was following the standard Williams track with almost textbook precision. Gayle never stopped celebrating the milestones, but she stopped seeing them as proof that Eli was on a path to a normal life. Too many things weren’t normal. They became more obvious as he grew.

  Most people with Williams are slow to start talking, partly because of their developmental delays and partly because of their weak muscles and poor motor skills. Their tongue and larynx muscles take longer than normal to gain strength and dexterity, so their ability to speak is even further delayed than it otherwise would be. In fact, some linguists believe those muscles may be less at fault for speech delays than the muscles in their hands, since rhythmic hand banging is a precursor to babbling in typical infants. Tellingly, delays in rhythmic hand banging correspond to the speech delays of children with Williams.

  Once they start talking, though, usually about two years later than normal, they don’t stop. Eli quickly became a fluent conversationalist, which expanded his social repertoire considerably. Still, he struggled with basic spatial and motor skills. At five, he took an IQ test that put his skills in block design and puzzle completion in the bottom tenth of a percentile for his age. His evaluator noted, “He seemed to enjoy playing with the test materials, but was not able to follow directions for how to use them.” Nonetheless, Eli “smiled and laughed and seemed delighted to come to the testing session.” At eight, he took the test again, with the same dismal results in spatial perception and reasoning. But now his verbal abilities were a relative strength. The evaluator noted that he was “curious, cooperative, and friendly,” adding, “He smiled and talked about what he was doing as well as what he saw in the assessment room.”

  In these tests he harnessed his verbal abilities, imperfect as they might be, to impress his evaluators and win them over. The evaluators, who were employed by the school district and had no experience with Williams, seemed surprised by Eli’s linguistic strengths and his bubbly personality, given his overall IQ in the “extremely low” range. But Gayle was well aware that a tendency to be skilled with language, despite deficiencies in spatial reasoning, math, and logic, was a signature trait of Williams. She’d come across a 1991 article in Discover magazine that called people with Williams “smart and mentally retarded, gifted and inept at the same time.” She chafed when she read the description, but she couldn’t argue with it—other than the use of the term “mentally retarded,” which had since fallen out of favor.

  She sometimes wondered if it might be easier to have a child whose disability was consistent across the board, even if that meant his language skills were as bad as his spatial skills. At least that way your heart wouldn’t jump at the glimmers of brilliance. You would always know what to expect. And it would be easier to accept that the disorder was real, the prognosis correct. You could stop hoping the gifts would make up for the deficits.

  * * *

  EVEN WITHIN THE WILLIAMS COMMUNITY, different parents react to their child’s diagnosis in vastly different ways. Some downplay its effects, insisting that their kids are “not like the other Williams kids”—that they play sports, earn As in school, and don’t hug strangers. And while there are some very high-functioning people with Williams who test in the normal range of intelligence and who observe the standard rules of social engagement, descriptions like these often turn out to be exaggerations. In some cases, kids earned As because their class goals were adapted to their abilities. If they joined a sports team, they often spent most of their time on the bench, because their poor visual-spatial skills made them a liability. Some kids learned to refrain from hugging, but often they still stood too close to people or touched them too often. An exceptionally capable woman in her twenties with Williams said she still had to constantly remind herself to stand an arm’s length away from the person she was talking to. Otherwise she would inevitably drift too close.

  One family sent their son—the same age as Eli, with similar intellectual abilities and behavioral tendencies—to a summer sleepaway camp organized by their church. They did not inform the camp’s organizers that he had Williams syndrome. In fact, they never used the word “Williams” at school or in social settings. The boy’s father said it was because he didn’t want his son to be labeled.

  “It creates too many preconceptions,” he explained. “People think that’s all he is. They expect less.”

  So the parents told the camp counselors their son “needed a little extra help” and left it at that. At the end of the week, they picked him up and discovered that he had spent the whole week either in the infirmary, where he landed with Williams-related gastrointestinal trouble, exacerbated by greasy camp cuisine, or in the chaplain’s office, where he sought refuge after being ostracized by his peers. The camp’s director said he was sorry the boy had suffered, but chastised the parents for not being up-front about his condition.

  “You should have told us,” the director said. “We’re really not equipped to handle special needs.”

  On the opposite end of the spectrum, some parents become so overwhelmed by their kids’ limitations that they overlook their strengths. A woman named Gloria, whose daughter has Williams syndrome, was floored to discover when her daughter was just five that another girl in their small New England town also had Williams. The two girls were even the same age. Gloria was so thrilled to find a ready-made friend for her daughter that she contacted the other girl’s mother and arranged a play date at the local McDonald’s.

  While the kids cavorted on the bright plastic playscape, the women chatted. Gloria asked about the other mother’s plans for her daughter’s education. Would she insist on inclusion, meaning the girl would take all or most classes in a regular classroom with her typical peers? Was she already working with an occupational therapist? What about a speech therapist? The other woman shrugged. She hadn’t thought much about the future, it seemed. Her gaze drifted to the ball pit, where the girls squealed with delight while they played.

  “She’s retarded,” the woman said nonchalantly. “There’s nothing I can do to fix that.”

  Gloria, horrified, never set up another play date. She didn’t see the woman again until a chance encounter in the grocery store a few years later. There the woman’s daughter
was running wild in the dairy section, licking the lids of the yogurt containers. The woman did nothing to stop her or to discipline her, as if she simply expected this kind of behavior. Gloria’s own daughter watched with wide eyes, bewildered by the scene. She knew these antics weren’t acceptable; she’d be in trouble if she tried anything like it. In comparison to the other girl, she was a model of decorum.

  The other mother was apparently oblivious to the immense capacity people with Williams have for personal growth. While some forms of intellectual disability cause people to plateau relatively early, people with Williams keep learning all their lives. The rate of learning tends to be much slower than normal, of course. And it doesn’t come easily; it needs to be nurtured and encouraged. Gloria was painfully aware that nothing in her daughter’s life would be easy, but she also lived with hope for the future. So did her daughter—and she achieved many of the goals she set for herself. In middle school she was in a typical classroom with nondisabled peers, where she was challenged but stimulated. She auditioned for parts in school plays, and got them. She made friends.

  * * *

  ONE SUNDAY AFTERNOON, MORE THAN a decade after Eli’s diagnosis, Gayle sorted through a plastic bin filled with Eli’s medical records and school evaluations. Her weekends, like the rest of her free time these days, centered on Eli and on shuttling him to the special-needs sports leagues and Williams syndrome events that eclipsed her former social life. In the downtime from these activities, she tried to catch up on her rest—and to maintain some semblance of order in her home, where she was perpetually organizing and de-cluttering from the chaos of raising a kid. She was forever selling outgrown clothes on eBay and furtively removing Eli’s old toys: the ones he never touched anymore but would insist he couldn’t part with. Today she was tackling the documents she’d been shoving into a bin for years, which she meant to file neatly away. But she couldn’t help reading through each one first, reliving the trajectory of Eli’s life so far.