She couldn’t help noticing that Eli’s fascination mirrored her own, but she wasn’t sure what to make of the connection. She often wondered how much of his personality was predetermined by Williams syndrome. Was there any part of him that was just him? And was there anything in him that she had passed down, either through nature or nurture?
Geneticists offered a mathematical solution: of the roughly 20,000 genes every human carries, Williams syndrome affects only 26. So 99.9 percent of Eli’s DNA remained intact, just as it had been copied from Gayle and her ex-husband. If there was a genetic basis for morbid curiosity, Gayle and Eli could both have it. A predilection for the macabre certainly wasn’t prevalent either in the Williams community or the general population. Like all children, Eli was unique in the world. He wasn’t merely a manifestation of a genetic deletion.
The anxiety questionnaire reminded Gayle that Eli had been lucky not to acquire the disabling fears and phobias common in people with Williams. But it also reminded her of the disorder’s isolating effects, which he had not escaped.
“ ‘How many close friends does your child have?’ ” the questionnaire asked. Gayle sighed. “Zero,” she wrote.
“ ‘How many times does your child do things with friends outside of school?’ ” Gayle read. “Less than one,” she checked.
“ ‘My child complains of loneliness,’ ” Gayle read. She checked “Never” but wondered if her answer would soon change. Seeing Eli despondent over Susie’s rudeness had made her realize that he was no longer impervious to rejection. Loneliness was certainly on the horizon; maybe it was already a factor in the angst that sometimes overwhelmed him. Just because he didn’t complain about it didn’t mean he didn’t feel it.
“ ‘My child exhibits strange behavior’?” Gayle read, looking up from the survey to raise her eyebrows at Mimi. “It says, ‘Describe.’ What am I supposed to say to that? It would take pages. I mean, he gets too close to people, he hugs them, he sings all the time. Is it strange to pretend to scrub floors? Or for a thirteen-year-old to throw tantrums?” She checked “Always” but didn’t add a description. She didn’t know where to begin. She was so used to his unusual habits that they’d stopped seeming strange long ago.
“ ‘What’s the best thing about your child?’ ” she read.
“He’s a character,” Mimi said. Gayle nodded. She wrote, “He’s funny and engaging.”
“ ‘What’s your greatest concern?’ ” she read. This one was easy: her go-to response hadn’t changed, even if Eli had. “His future,” she wrote.
* * *
BY THE BEGINNING OF ELI’S eighth-grade year, Gayle’s concern for his future had shifted into overdrive. In just one year he’d be in high school, where, according to his education plan, he’d begin vocational training for a possible career. Now was the time to get him more independent, to give him the best shot at autonomy as an adult.
Gayle set new standards for Eli at home, requiring him to do for himself some of the things she’d always done for him. She started small. One day he peeled himself a banana for the first time. Another day he opened his own bottle of water. She’d justified doing these things in the past because his limited dexterity meant they took him longer than they took her, and she hated to watch him struggle. Now she let him struggle.
She told him he’d have to start preparing his own cereal in the morning. This, too, she’d always done, but since Eli woke up early—usually around 5:30 or 6 a.m., when Gayle was clinging to her last hour of sleep—she decided it was time for a change. She worried that he’d dump a half gallon of milk on the floor or upend a bowl full of cereal. But day after day she came downstairs to find the milk unspilled, the floor still clean, and Eli chowing down. It was a small step, but Gayle was thrilled.
Still, she was so used to stepping in that it took as much or more effort to retrain herself than to retrain him. For the most part Eli did what she asked him to without questioning it. It was Gayle who had to fight the urge to intervene whenever he had difficulty.
One brisk fall morning, she started to help him into his coat and then dropped the sleeve she was holding.
“You need to do this yourself,” she said, as much to herself as to him. “I’m going to be in trouble if you go to high school without knowing how to put your coat on.” He cheerfully accepted the task, and although it took a good five minutes of flailing effort, first with the coat upside down, then right side up, he got it done.
The only thing harder for Gayle than being tough on Eli was being gentle on herself.
At the urging of a friend who worked for the Yale School of Public Health, she took part later that fall in a study of quality of life among caregivers for people with disabilities or chronic illness. She expected the questions to be strictly fact based, but when she sat down for an interview with the young woman conducting the study, she found that they were more about her feelings.
“When did you find out about your son’s disorder?” the researcher asked, after Gayle had laid out the basics of Eli’s condition. Gayle told her about the developmental delays, the day care mom’s warning, the visit to Dr. Pober.
“How did you feel about that?” the researcher asked every time Gayle reached a stopping point in her story. Gayle shifted uncomfortably in her seat. Shitty, she wanted to say, but tried to offer more nuance.
The researcher asked what Gayle did to care for Eli. Gayle gave a rapid-fire list. There were the trips to the doctor, the medications, the behavior plan, and the meetings at school when the behavior plan didn’t work. There were the typical parental tasks of feeding and chauffeuring, plus the additional daily duties of helping Eli with his shower, assisting with his bathroom hygiene, and getting him dressed. Then there were the ways she tried to enrich Eli’s life: the singing lessons and the sports leagues, the homemade floor scrubbers and the flaming tiki heads.
“And what do you do to take care of yourself?” the researcher asked.
“Huh,” Gayle said. She was silent for a long while, thinking. “Nothing, I guess.”
“Do you go to the gym?” the researcher suggested. “Do yoga? Get a massage?”
“No,” Gayle said. “I don’t really have time to. I’d have to take Eli to my mother’s.”
Gayle thought some more. She was stumped, other than to say that she took medication for anxiety. That didn’t seem to count.
“I don’t know what I would do for myself,” she admitted finally. “What do people do?”
She knew that the state’s Department of Developmental Services ran “respite centers” where people with developmental disabilities could participate in supervised activities while their caregivers enjoyed a few hours to themselves. Gayle had heard they were nice places, although she’d never considered dropping Eli off at one. She’d never left Eli with a babysitter outside her own family.
But the child care issue was an excuse more than anything else. It simply didn’t occur to Gayle to spend time away from Eli. Their lives were too tightly entwined.
Gayle had never noticed her identity slipping away. Looking back, she could see that, not so long after becoming Eli’s mom, that was suddenly all she was: Eli’s mom. It was partly the isolation of finding herself on the margins of parenthood, in the special-needs borderland just outside but worlds away from the seemingly sunny realm of normal families. Faced with the magnitude of Eli’s needs, and the scarcity of support, Gayle had stretched herself to fill every gap in his life. She’d developed superhuman abilities she never could have imagined before Eli was born. In the process, she lost the parts of herself that functioned for anything other than caring for her son. He became not only the most important person in her life but the essence of her life. Even before her divorce, it was just Gayle and Eli, alone, together.
The Yale researcher asked Gayle whether she was dating anyone. Gayle nearly snorted; the answer was no, as it had been for years.
“As far as even meeting someone, I can’t see where I wo
uld fit that in,” she said. “Even if I knew where that time would come from, I still can’t see taking attention away from Eli and giving it to someone else.”
The way the woman knit her brows when she wrote this down made Gayle wonder whether her answer was unusual, or maybe even unhealthy.
She had never questioned the way her life revolved around Eli, but after the Yale interview she wondered whether she should. She had spent endless hours contemplating Eli’s prospects for independence. Now she began to consider her own.
On the Williams syndrome Facebook page, she responded to a parent who was having trouble finding a social niche. Gayle wrote, “At this point, Eli and I are each other’s best friend. As cute as that sounds, I’m realizing that it’s not going to be good for either of us in the long run.”
While Mimi would watch Eli almost anytime Gayle asked, Gayle never wanted to impose upon her mother unless she had a good reason, like a work trip or a doctor’s appointment. Now she tried to convince herself that it was OK to ask just to take some time to herself. One night she called on Mimi’s child care services so she could meet up with a childhood friend she had recently reconnected with on Facebook. Recalling the hangouts of their school days, they met at the mall, bought candy at Munson’s, and sat and talked in the food court. To Gayle’s surprise, she had a good time. This, she thought, was the kind of thing people did for themselves.
She made an even more uncharacteristic leap when she agreed to accompany her friend Marilyn to New Orleans for a four-day weekend, a spur-of-the-moment decision prompted by an airfare sale. It was Gayle’s first vacation without Eli since the day he was born. For her, it was a form of time travel: a trip back to the life she’d had before she had him. And Eli was thrilled by the prospect of a four-day slumber party at Mimi’s house, surrounded by relatives. But before she even boarded the plane, Gayle felt a pang of guilt for leaving him for so long and for spending money on herself instead of him. During her first two days in New Orleans, she checked in with Mimi by phone every few hours. Almost as soon as she managed to relax enough to enjoy herself, it was time to leave.
Back home, she took a tentative stab at dating by posting a profile on a dating website. Although her bio didn’t mention having a child with special needs, she told prospective suitors about Eli after they exchanged a few e-mails. Often the conversation, and the relationship, ended there. However, a man named Brian responded with a warm note that ended, “By the way, I have a ten-year-old son with special needs. You’re not alone.”
Gayle was intrigued. He seemed interesting, well educated, and, judging from his photo, attractive. Gayle agreed to meet him for dinner.
But when she went to the restaurant where they’d arranged to meet, she didn’t recognize the man waving at her. His profile photo, apparently, had been exceptionally flattering—and at least a decade old.
For the next two hours, Gayle sat picking at her food and listening to an endless monologue about Brian’s accomplishments in the business world, the property he owned, how much money he made, even how much money his ex-wife made. His disabled son, it turned out, had only a mild sensory processing disorder. He was otherwise a prodigy, by his father’s account. Brian boasted about his son’s high grades and his talent as a cellist, oblivious to any sensitivity Gayle might have on the subject of academic success. He didn’t ask about her son, in any case. He didn’t ask much about her at all. The few questions he did ask were merely rhetorical, a springboard to his next talking point: “Have you ever been to Lake George? No? Well, I have a cabin up there . . .”
Brian texted Gayle several times over the following week. She responded politely but made it clear that she wasn’t interested in a second date.
She still wasn’t sure she was interested in any dates, period. Although she sometimes felt lonely, she also cherished what little quiet time she got to herself. Dating seemed like a gamble, more likely to be a hassle than a pleasure. And while she and Brian wouldn’t have clicked anyway, it occurred to her that, for her or for any single parent of a special-needs child, finding the right person would require lottery-winning luck. He’d have to be a good fit both for her and for Eli—someone compassionate enough not to see her high-maintenance son as unwanted baggage, or to resent the fact that Eli would likely take up more of her time than she could devote to a relationship. She hadn’t entirely given up on finding this ideal partner, but the energy it took to keep up with Eli made it impossible to put much effort into searching for someone who might not even exist.
She stopped checking the dating website.
* * *
FOR ELI’S FOURTEENTH BIRTHDAY, GAYLE took him to see Sesame Street Live. He was the oldest kid there by nearly a decade, but he sang along with the music as exuberantly as the four-year-olds. Gayle even got him backstage to meet Cookie Monster. The real Cookie Monster! In person! It was all he could talk about for days. Despite wanting him to fit in with kids his own age, Gayle was touched to see how at home he felt on Sesame Street. She cherished the childlike parts of his personality even as she pushed him to mature.
At home Eli could often pass for a four-year-old. At school, however, his teen angst only intensified, despite the fact that his psychiatrist had switched him from Celexa, which had seemed to agitate him, to Abilify, which Dr. McDougle had recommended at the convention for anxiety-prone people with Williams. Days after swooning over Cookie Monster, Eli called his classroom aide a punk. When she sent him to the time-out room, he yelled, “This is fucking bullshit!”
He now seemed to spend more of his school day in time-out than in class. He knew that being fired was an extreme punishment for adults, so whenever the special-education staffers put him in time-out, he retaliated by telling them they were fired. Before long he had fired each and every one. But he still ended up alone in the time-out room, fuming, nearly every day.
Gayle worried that things would only get worse the following year, when he went to high school. He had been taking field trips to the new school, to meet the staff and acclimate to the environment, so it wouldn’t be such a shock when he arrived in the fall. The first time he visited, he grabbed a girl’s hand in the hallway and pressed it to his face. Gayle wasn’t surprised to hear about the incident. It’s a whole school full of kids he hasn’t met before, she thought. He’s going to want to touch them.
More and more, Gayle found herself withdrawing from the social world she’d tried to cultivate for Eli. She kept him home from a school dance and a class trip to an amusement park where she was sure he would embarrass himself. She even turned down an invitation to a fourteenth birthday party for his cousin Kylie. It’ll be too exhausting, she thought. The other kids won’t want to talk to him anyway, and I’ll just be running after him every time he goes to hug someone. And then he’ll get pissed. Gayle, too, had been fired a few times since the fall, although Eli always rehired her.
Her fear of becoming housebound seemed to be coming true in slow motion, and she felt powerless to stop it. After so many years spent trying to help Eli find his place in the world, she was starting to doubt whether there was anyplace, outside of his own home, where he’d be safe and accepted. By spring, when the school sent Gayle a draft of Eli’s ninth-grade educational goals, she wondered whether he even belonged in public school anymore. It marked a low point in Eli’s life, and a lower point in her own, when she thought he might be better off in a school just for special-needs kids, where he wouldn’t stick out quite so badly.
She mentioned this to Carrie, the special-education consultant, when Carrie reviewed the school’s plan for Eli.
“Maybe public high school just isn’t the right fit,” Gayle suggested. “Maybe it would be better to put him in a special school.”
She said it sincerely, thinking Carrie might agree. But, to her surprise, Carrie reacted as though Gayle had suggested setting Eli adrift on an iceberg.
“The reason we pushed for him to be in a mainstream setting was because he’s so social, and you wanted him
to be around kids he could learn from and model,” Carrie said sharply. “That hasn’t changed.”
“I know,” Gayle said, sighing. “But how can he model them if he’s an outcast? What if they’re mean to him? If they won’t let him sit next to them at lunch? I don’t want to put him through that.”
“Listen,” Carrie said. “You’re not doing him any favors by protecting him from those experiences. Even if they’re not all positive, he can learn from them.”
Gayle had already told Carrie about the social outings she’d avoided recently and how Eli’s behavior sometimes made her want to keep him at home.
“This isn’t the 1940s,” Carrie said now. “You can’t just hide him.”
“I’m not trying to hide him!” Gayle said.
“Yes you are,” Carrie said. “You have to deal with the reality of what you’re saying. You’re ashamed of him.”
Gayle blinked back tears. She felt outraged and defensive.
“That’s not true,” she said, trying not to let her voice rise to a whine. “I’m embarrassed by his behavior, but not by him. I wasn’t embarrassed when he was the oldest kid at Sesame Street Live. I didn’t keep him home from that. I just don’t want him to get in trouble or become a pariah because of his behavior around his peers.”
Carrie’s voice softened.
“I can tell you’re on the verge of tears right now,” she said. “But you have to let yourself feel the way you feel. If you’re embarrassed, just let yourself feel embarrassed. It’s OK.”
Gayle’s cheeks were already wet. Am I crying because she’s right? she wondered. Maybe it does look like I’m embarrassed by him when I’m always grabbing him and telling him to behave. But it doesn’t feel that way. I just want what’s best for him.
The Boy Who Loved Too Much Page 25