The Boy Who Loved Too Much

by Jennifer Latson

  Gayle had been horrified to hear how Eli was restrained, but equally horrified to learn that he was hitting and kicking people. He’d never done that at home—at least, not since his toddler years, when he didn’t have the words to express his frustration. Since he was normally so eager to please people that he’d never dream of hurting them, Gayle could only conclude that he was feeling levels of anxiety and agitation he hadn’t experienced since those nonverbal years. Now it seemed the feelings were intense enough to overwhelm him before he could put them into words.

  The week before Gayle’s meeting had been fairly typical by Eli’s recent standards. His latest progress report noted two incidents of touching other students, three episodes of crying, one destructive outburst (he threw a pencil), and one act of aggression (he pushed a special-ed classmate who was fighting with him to be first in line for lunch).

  Eli’s teachers suggested a new reward system for good behavior, upping the ante from tokens to social incentives. Eating lunch in the cafeteria, instead of alone in the classroom with an aide, could become a privilege to be earned, since the social aspect of lunch was such a powerful motivator. The idea of exploiting Eli’s love of people to enforce his obedience bothered Gayle. But she didn’t have any better ideas. Eli had become a powder keg. It was impossible to know what would set him off or how to prevent it.

  Some things, of course, had always triggered meltdowns. Loud noises had upset Eli since preschool, when he would yell at younger kids for crying. And he had never responded well to being told “No.” Like a lot of Williams kids, he had a low tolerance for refusal. Furthermore, while rudeness and rejection tended to roll right off him, repeated abuse eventually wore out his patience. One girl in his special-ed class had a habit of hitting him anytime she got the chance. At first he seemed surprised whenever he opened his arms to hug her and got clocked instead. But over time he grew indignant. Eventually the sight of the girl alone was enough to make him stomp his feet and shout at her. Their teachers had to keep them separated in class to avoid an ugly scene.

  But Eli’s recent outbursts didn’t depend on external triggers. Sometimes he just seemed to be in a bad mood, spoiling for a fight. One day he talked back so much in class that his teacher marched him down to the dean’s office, where he was told that backtalk could be punished with detention. He came home that afternoon in tears, terrified. In his mind detention was a synonym for prison. Gayle, surprised as well, e-mailed the teacher, who assured her that he would never actually be sent to detention. No one from the special-ed class would.

  “It was offered just as an example of disciplinary consequences,” the teacher explained. In that week’s progress report, she wrote that Eli had had a “very difficult day” that day. He had refused to do his schoolwork and had “yelled at his teachers for the greater part of the day,” according to the report.

  The fact that his teachers were keeping track of his disruptive behavior was a trigger in itself. Eli knew what it meant when he saw them writing in his chart. Their evident irritation with him heightened his own irritation. It often pushed him over the edge from cranky to infuriated.

  One day Gayle was called to the school because Eli had grabbed his chart from an aide’s hand and crumpled it, then head-butted the aide. When she met with Gayle, the aide suggested that Eli’s behavior might be a plea for attention. Gayle disagreed, countering that his heightened anxieties, coupled with a confusing rush of adolescent hormones, were more likely to blame. The aide cocked her head, then concluded that both were factors.

  “He’s a complicated little guy,” she said, sighing. She seemed both sympathetic and resigned to his plight. Clearly she believed that her best efforts to correct his behavior were in vain.

  * * *

  AFTER ELI’S COUNSELORS AT MUSIC camp urged him to develop his vocal talent, Gayle signed him up for singing lessons at a music school not far from home. She thought he would be thrilled by the opportunity, but lately his displeasure in taking instruction seemed to outweigh his pleasure in singing. He had become as noncompliant with his voice teacher as with his special-ed teachers—although less destructive, possibly because Gayle was always there to keep him in check.

  His disobedience began as soon as they set foot in the building, where signs everywhere proclaimed, “This is a MUSIC SCHOOL and teachers need QUIET in the hallways.” Eli pointedly ignored the warnings and spoke in his normal, booming tone—surprisingly loud for a boy with sensitive ears, but his own volume never seemed to bother him.

  One evening Gayle brought Eli to his weekly lesson with the voice instructor, Erin, in a stuffy, windowless room just big enough for an upright piano, a bench, and a few metal folding chairs. Gayle sat in the corner and made a point of looking at her phone so Eli wouldn’t feel like she was scrutinizing him. Erin led him through a series of scales. He hit the notes perfectly, singing with all his lung capacity.

  The previous week, Erin had written down the words to a practice song so he could sing it at home. Now he belted out the song to show her he had done his homework.

  “Good,” Erin said. “Let’s sing it once through together, and then we’re going to try to sing it in a round.”

  Eli had other plans. “Do you remember the Cookie Monster song?” he asked. “‘C’ is for cookie, that’s good enough for me / ‘C’ is for cookie, that’s good enough for me—”

  “I do,” she said, cutting him off. “Does that remind you of this song?”

  “No.”

  “Then what made you think of it?”

  “Because I like Cookie Monster! NOM NOM NOM!”

  Erin ignored the interruption and forged ahead, offsetting Eli’s loudness with the gentle plinking of piano keys. “OK, ready? We’ll sing it once through . . .”

  Eli humored her for a while, but his heart wasn’t in it. “Are you done?” he asked fifteen minutes into the half hour class. Erin shook her head.

  “You’re not?” he asked incredulously, as if they had been at it for hours. “What time are we gonna leave?”

  “Are you being nice?” Gayle asked, looking up from her phone.

  “I am. I’m being good,” he said.

  “Are you going to perform?” she prodded.

  “I am perform!” he said indignantly.

  Erin tried to teach him to play a few simple chords on the piano for the next song, “Oh, What a Beautiful Mornin’,” positioning his fingers over the right keys and pressing his hand with her own. Eli pulled his hand away and hammered the high keys frenetically, clearly frustrated.

  “Look, I’m doing dunnuh dunnuh dunnuh dunnuh,” he said, singing the notes, and quickly added, anticipating the coming rebuke: “I’m trying my hardest!”

  “Maybe we’ll just focus on singing,” Erin said wearily.

  “Are we done?” he asked, and pounded the highest keys again. Erin wrested control of the piano and led him through the song’s first verse.

  “Let’s do that verse again, and then I’ll sing the chorus with you,” she said when he finished.

  “After that?”

  “After that I’ll play it through and you can just sing it,” she said while he stared at her expectantly. Finally she gave in, well aware of the answer he was hoping for. “And after that we’ll sing the cookie song.”

  “All right!” he said, smiling. He considered this a resounding triumph. Gayle, meanwhile, did not. He could sing the cookie song at home. She had hoped he’d get more out of singing instruction than lessons in manipulation. He was already skilled enough at badgering people into giving him what he wanted.

  * * *

  GAYLE ARRIVED AT ELI’S MIDDLE school early in the morning on the last day of May to meet with his teachers, aides, and therapists, along with the school’s director of special services. Under Connecticut’s special-education guidelines, this group was designated as Eli’s planning and placement team, which was officially required to meet with Gayle at the end of each school year to review his progress and outline his
educational goals for the following year. This year, however, Gayle had already met with them a half dozen times to address Eli’s behavior problems.

  Gayle brought along a special-education consultant, Carrie Drake, who had attended these meetings since Eli was in kindergarten. Her services were expensive but worthwhile: she helped ensure that Eli was getting everything he was entitled to under the Individuals with Disabilities Education Act. She was better versed than Gayle in the specifics of the law, which required schools to provide specialized services such as physical, occupational, and speech therapy—or for the school district to cover the costs of these services if it didn’t offer them. It also mandated that special-ed students be integrated with the rest of the student body to the fullest degree possible and have equal opportunities to participate in athletic and extracurricular activities, with modifications if necessary.

  Carrie was dismayed to learn that although Eli’s education plan called for him to meet regularly with a group of nondisabled students who had volunteered to help him build social skills, the group had never actually met. The volunteers also participated in student council and other clubs; their teachers thought they were overextending themselves and had urged them to cut back, starting with this extracurricular obligation.

  Overall, however, Gayle was happy with the school district’s staff and their efforts to accommodate Eli. They had been overwhelmingly kind and inclusive. It was clear that they cared deeply about Eli, even if he had grown less endearing since he’d started kicking them.

  In the meeting, Eli’s education team agreed with Carrie that he should spend more time learning and practicing social skills, particularly respecting personal space and keeping his sexual impulses under control. His behavior charts revealed alarming statistics: on two different days, aides had recorded forty incidents of “inappropriate touching of self.”

  Gayle was skeptical of the statistic, but she couldn’t argue with the behavioral goals outlined in the team’s plan for the following year, even if they were worded in a declarative voice that sounded like wishful thinking. For example, “Eli will respond to a visual cue to keep his hands on the table.” Good luck, she thought.

  She had no problem with “Eli will add novel social questions to his repertoire,” since “I like your shirt” still dominated his attempts to make conversation. The plan even included a numerical objective: “Eli will add five new questions to his repertoire, not including ‘How are you?’ or compliments of clothing.”

  Nor did she take issue with “Eli will orient pants and shirts correctly.” It was a highly pertinent goal, since, when left to his own devices, Eli put his clothes on upside down, inside out, or in any number of logic-defying ways. At home Gayle helped him get dressed, but at school he was expected to change on his own before and after gym class. His teacher described his current ability as “Unable to orient without assistance, unless by chance.” Sometimes he got lucky. There were, after all, only so many ways to put on pants.

  What Gayle objected to were the proportions of the educational plan, which included vastly more academic than behavioral goals. For example, in the regular-ed classes Eli attended, such as science and social studies, he was given the objective of writing down one fact for every five minutes of lecture. Goals like these struck Gayle as arbitrary and ultimately pointless for Eli. Now that he was a teenager, Gayle cared less and less about him trying to memorize geography he’d never use or scientific theorems he’d never understand.

  “I just want to make sure that what we spend time on is useful and practical,” she said in the meeting. “I’m not saying he can’t learn. He can tell you every detail about every fan and vacuum in the universe. Of course he’s capable of learning. We just have to make sure it’s meaningful.”

  Carrie agreed, arguing that academic goals were less important than the skills that would improve Eli’s quality of life in the long run. In terms of time alone, the education team’s plan called for twenty-six hours of academics (math, English, reading, science, and social studies) each week, with only five hours devoted to life skills. These included: “Eli will demonstrate the ability to use the microwave for reheating or preparing simple snacks, such as popcorn” and “Eli will demonstrate the ability to fold a T-shirt.”

  Even some of the life skills goals listed struck Gayle as nonessential. One was telling time with an analog clock, which Gayle protested seemed irrelevant in an age of watches and cell phones, especially considering that time itself had little concrete meaning to Eli.

  “I mean, he can probably learn to tell you what time it is by the numbers, but it still doesn’t register with him,” she explained. “He just doesn’t think of time that way.”

  His teachers insisted that it would be a valuable skill at school, where all the classrooms had analog clocks. “At least he might be able to identify the time for specific events—lunchtime, or the end of the day,” his speech therapist said. “And that would help him stay on top of his daily routine.”

  Gayle also balked at a proposed real-world application of Eli’s math skills: going into a shop, buying something with a twenty-dollar bill, and calculating the correct change. Gayle worried that this was a financial disaster in the making.

  “If he goes into a store with a twenty, I can tell you right now he’s not coming back with the change,” she said. “He’ll get taken advantage of completely. Even if he could do the math, he’ll just get distracted. They just have to say ‘Hey, look at that’ and he’ll forget all about it.”

  The special-education director pointed out that the intention was partly to help him learn the skills that would make him less likely to be taken advantage of: skills like keeping his wallet secure and his money safe, and estimating his change before buying something and counting it afterward.

  “I’m not sure if he’s ready to even have a wallet,” Gayle said. “He leaves things behind everywhere we go. He’ll forget his entire backpack sometimes.”

  “Let’s start small,” the director suggested. “Maybe he just carries an ID card in the wallet for a while. Then we can practice with buying something that costs less than a dollar, and work our way up.”

  In the end Gayle relented. The team’s goals for Eli were, ultimately, the same as hers: to help him become more independent and prepare him for his best possible future. She wasn’t even sure afterward why she’d resisted the idea of giving him hands-on practice making purchases. She’d regarded it as setting him up for failure. But failure was one way to learn. It just wasn’t a way Gayle was entirely comfortable with.

  While she wished the school would put less emphasis on teaching social studies and more on teaching social skills, she recognized that there were other educational philosophies besides her own. She could see the value in giving Eli all the elements of a traditional school experience, rather than turning his eighth-grade year into a kind of remedial finishing school. And while her impulse was always to fight for what she believed was best for Eli, she had to concede that she didn’t have all the answers, or he would already be a model of social appropriateness. She resolved to choose her battles with his teachers, just as she had begun choosing her battles with him.

  Eighteen

  Where the Hugging Never Stops

  Given Eli’s behavioral volatility, Gayle wasn’t sure whether to bring him to the Williams Syndrome Association’s convention that summer. She hadn’t been to one of the biennial conventions since he was little, mostly because they’d been held in distant cities. But this one would be in Boston, and she had no reason not to attend—other than the increasing difficulty of bringing Eli anywhere. Still, she knew that many of his summer camp friends would probably be there, and she didn’t want to deprive him of the chance to reunite with them. She herself was eager to catch up with other Williams parents and to hear about the latest advances in Williams research from the experts who would lead panels there. So she decided to go, and enlisted her mother’s help in corralling Eli.

  Mimi only rel
uctantly agreed. She often questioned Gayle’s insistence on carting Eli to picnics and parties, restaurants and sporting events. For all the effort Gayle put into it, it seemed to Mimi that every outing was a debacle. Eli either hugged everyone in sight or threw a tantrum because Gayle wouldn’t let him. Gayle usually came home frustrated and exhausted.

  “What do you get out of it? What does Eli?” Mimi sometimes asked. “Do either of you have a good time?”

  Mimi thought it might be better to avoid situations that would rile Eli. Gayle disagreed. If he didn’t go out in public, she argued, he’d never get better at handling those very situations. What scared Gayle, in fact, was that lately she had started giving in to the temptation to avoid events where she knew she’d spend her time chasing Eli down and correcting his behavior. It was easier to stay home, where Eli could entertain himself without offending anyone, and Gayle could just relax. She worried that this was a slippery slope, though, and that if she didn’t make an effort to stay involved, one day they’d wake up and find themselves housebound.

  So, after Gayle succeeded in recruiting Mimi, the trio traveled to Boston over the Fourth of July weekend. They joined more than 1,500 people from all over the country, roughly a third of whom had Williams. The group caused a chaotic scene in the lobby of the downtown Sheraton, where the few hotel guests who weren’t there for the convention seemed awestruck by the whirlwind of gleeful greetings. When Mimi, Gayle, and Eli walked through the lobby’s sliding glass doors, Mimi wondered aloud whether the hotel had issued a warning to its non-Williams patrons.