“I’m going to be in the Blue Man Group?” he had asked nervously over breakfast.
“No, you’re going to see the Blue Man Group,” Mimi said.
“And what’s after those blue guys?” he asked.
“Your mom will come and get you, like always. And then we’ll take it from there.”
Mimi, too, was more reserved than usual after the previous day’s melee. She wasn’t mad at Eli; she couldn’t blame him for behavior that was so clearly out of his control. She felt as bad for him as she did for Gayle, since his tantrums made him as miserable as they did everyone else.
She and Gayle split up for the morning to attend different panels. Mimi attended one for grandparents of kids with Williams. When she met Gayle for lunch afterward, she was shaking her head over the saccharine spin some of her fellow grandparents put on their experiences.
“They were all smiles, saying that having a kid with Williams brought the whole family closer together,” she told Gayle over a salad. “They said at first it was sad, not knowing what the future would hold, but that now it’s just a joy.”
“Well, I’m sure they didn’t want to scare anybody, especially the families with kids who were just diagnosed,” Gayle offered.
“I was this close to standing up and saying, ‘Come on people, let’s be honest,’ ” Mimi went on. “I can’t tell you how many times I heard the word ‘joy.’ I wanted to say, ‘Yes it’s such a joy when a thirteen-year-old boy has a complete meltdown in the mall. That’s so joyful.’ ”
Gayle smiled, knowing that her mother would be the last person to stand up in a room full of grandmothers and call them on it. Mimi had a heightened sense of propriety that Gayle lacked. She was usually the one talking Gayle off the ledge when Gayle threatened to give someone a piece of her mind.
“There was one touching moment,” Mimi admitted. “One woman started crying. She has a five-year-old granddaughter, and a two-year-old grandson who just got diagnosed with Williams. When the parents explained about Williams to his sister, she asked, ‘Will it go away when he gets older?’ The parents said, ‘No, he’s always going to have it.’ So the five-year-old said, ‘Well, I’m going to be a scientist, so I can cure it.’ At that point everyone started crying.”
* * *
THE SCENE AT DAY CAMP was even more chaotic at the end of the day than at the beginning, since its organizers had devised an elaborate protocol to prevent the kids from leaving with the wrong people. Parents had to line up and show ID before their children would be released. The line was long, and the kids were wild.
Gayle found herself waiting behind another Connecticut woman she had known for years: Kristin, whose daughter Penny was about Eli’s age. They commiserated over the bottleneck at the checkout desk and the havoc it was wreaking on their kids, who could see their parents and had to be held back from running out to join them. But they couldn’t fault the organizers for being extra cautious with this group. Penny, even more than Eli, had a dangerous habit of wandering off after strangers. In a parking lot once, on a trip to the beach, Kristin had turned her head for a moment and Penny had climbed into another family’s minivan after overhearing them say they were going out for ice cream.
Kristin told Gayle she’d recently enrolled Penny in a personal safety class for kids with special needs, where she was taught to seek out a trusted adult if she were ever separated from her mother or from a school group. Since Penny trusted everyone, she was given some tips on who would be the best choice: an adult in uniform, for example, or a mother with kids.
But Penny used the technique once when she wandered away from her mother in a store, and got so much attention that now she took any opportunity to try it out. If she couldn’t see her mother by looking straight ahead, Kristin said, she’d seek out a “trusted adult” before looking left or right. The previous night, at a convention dance party that Gayle had skipped, Kristin was standing five feet away from her daughter in the hotel ballroom when Penny briefly lost sight of her. So Penny flagged down a hotel staff member wearing a badge. Seconds later Kristin saw a team of hotel employees mobilize to search for this poor lost little girl’s mom.
“I’ve created a monster,” she said.
Finally Gayle got close enough to the front of the line to see Eli, who was growing antsy in the throng of children still waiting to be checked out. His voice carried over the others when he started to whine.
“Aww,” he moaned. “I’m ready to go. I’m hungry.”
Susie suddenly appeared with her older brother and younger sister, pushing past Eli toward their parents. Without looking Eli in the face, Susie muttered under her breath as she passed, “What are you crying about?”
“I heard you!” Eli shouted angrily. When she kept walking, holding her little sister’s hand, he added for effect: “You bastard!” Susie didn’t bat an eye, but her sister gasped and turned to look at him.
Gayle didn’t know what it was about Eli that provoked Susie. She hadn’t seen Susie treat anyone else this way, so it seemed that Eli in particular simply pushed Susie’s buttons. But now Susie was pushing his buttons, too. Gayle couldn’t help but take some satisfaction in seeing him talk back to his tormentor. She signed him out of camp and led him toward the elevator, unsure whether to give him stern words or a pep talk. Before she could do either, he lowered his chin and pouted.
“Susie was mean to me,” he said gruffly. “It broke my heart.”
Gayle gave him a one-armed side hug, pulling him close while they walked. “You know what? You have lots of friends. You don’t need to worry about her.”
“I don’t care about her!” he declared, nodding vigorously as if to convince himself.
“I just mean you don’t need to worry about what she thinks of you.”
He grew quiet, considering this. Something about it seemed to unsettle him more than it soothed: perhaps the loss of Susie as a friend he’d treasured until that day, or perhaps the way this loss hinted at a more troubling generality—that not everyone he liked would always like him back.
* * *
WITH 1,500 PEOPLE AT THE convention, Gayle couldn’t understand why the one person they kept running into was the one who caused Eli the most anguish. When Gayle, Eli, and Mimi left their hotel room half an hour later and pushed the elevator button to go down to dinner, the door opened to reveal, once again, Susie. Gayle, plotting an escape, paused just a moment longer than normal for someone who wanted to get on an elevator. She couldn’t pretend it was too full: it was empty except for Susie and her mother, who was texting, her downturned face illuminated by the glow of her cell phone. Gayle briefly considered pretending she’d left something behind in the room, but Mimi was already stepping onto the elevator. Gayle followed, placing a protective hand on Eli’s shoulder. She wedged herself between him and Susie.
Susie, wearing a sundress with jeweled sandals that showed off her pedicure, done in a rainbow of glittering metallic colors, pursed her lips meekly.
“I’m sorry,” she mumbled to Gayle while carefully examining her rainbow toes.
“What’s that?” Susie’s mother asked without looking up from her phone. “For what?”
“Oh, don’t worry about it,” Gayle told Susie quickly. She assumed the apology was meant for snapping at Eli earlier, but she didn’t want to have to explain to Susie’s mother that Eli had called her a bastard in reply. Her mother didn’t press the point.
Susie leaned forward to look at Eli on the other side of Gayle. “How are you?” she asked with forced sweetness.
“Good!” Eli said earnestly, taking the bait.
“What are you doing tonight?”
“Oh, we’re going to a noodle restaurant in the mall. Wagamama,” Gayle said.
“Yeah, noodles!” Eli said, beaming. “I love noodles.”
He looked up at Gayle for affirmation. “Mom, I love noodles!” he said again, rubbing his hands together. “I love noodles.”
“We heard you,” Susie hissed. �
��I mean, not to be rude.”
There was silence until the door opened on the fifth floor. Susie hurried off the elevator. Her mother trailed, head still bent over her phone. Gayle gave Mimi a long look, then glanced at Eli. This time he seemed not to have noticed the harshness of Susie’s reply. He was still grinning about noodles.
But the encounter left a bad taste in Gayle’s mouth. In some ways Eli seemed to be maturing, in other ways regressing. He’d stood up to Susie but hadn’t stopped being a target of her ridicule. And while Susie, a year younger than Eli, seemed to have the worldliness and attitude of a teenager, Eli was still throwing tantrums over lobster grabbers and clamoring for noodles like a toddler. As they stepped off the elevator, he was clutching two crayons he had taken from the hotel room and singing the theme song from Mickey Mouse Clubhouse. Gayle snatched the crayons from his hand.
“Here, give those to me,” she said. “You don’t want to look like a baby. I’ll put them in here.” She shoved them into a zippered compartment of her purse.
Walking through the Sheraton’s crowded lobby, however, she was reminded that Susie’s apparent precocity was an exception to the Williams rule. Many of the teens here, and even many of the adults, didn’t seem much more mature than Eli, and they shared some of his unusual habits and fixations.
A man in his twenties sat at a computer looking up YouTube videos of clowns, with which he was evidently as obsessed as Eli was with floor scrubbers. One link took him to a video of a ghoulishly grinning clown at a haunted house. The man looked stricken.
“Whoa, that is freaky!” he said to a friend who didn’t have Williams, sitting nearby. “Wow, I’ve never seen a clown mask like that. I don’t know about this.”
“You’ve never seen a clown in a haunted house?” the friend asked.
“No way,” said the man. “I think if I went to a clown haunted house, I’d run out before I got scared. Otherwise I could get a phobia of clowns.
“I don’t want a clown phobia,” he went on. “I love clowns too much. And I know people can get a phobia if they get scared.”
As Gayle, Eli, and Mimi made their way toward the mall, an older man with Williams greeted them, hugged each of them, and launched immediately into his life story. Gayle politely cut him off to say they were in a hurry to get to dinner. Moving on, they passed a young woman with Williams, in her late teens or early twenties, who sat on the floor, reaching out to grab people’s feet as they walked by.
At least my kid isn’t the only one acting strangely, Gayle thought. It occurred to her that the parents of these young adults weren’t hovering nearby, correcting their behavior. They knew their kids weren’t perfect, and that they risked embarrassing themselves or offending someone else, but they allowed them to be themselves all the same. It was, of course, a risk every parent faces. Typical kids could behave in offensive or embarrassing ways, too. It didn’t mean their parents could never let them out of their sight.
That thought occurred to Gayle again the next day, at the convention’s closing banquet, where a chorus of nearly a hundred teens and adults with Williams performed a song they’d spent part of the convention rehearsing together. Gayle had thought about signing Eli up for the chorus, since she knew he’d jump at the chance to sing in front of a crowd. But even before his epic meltdown, she’d worried that he would be too much of a handful at rehearsal. She didn’t want him hugging and harassing the other singers or becoming frustrated when asked to follow directions. She was afraid he would ruin the performance for others who were more capable.
Now, as the chorus began to sing and Eli watched them with obvious delight, she felt a pang of regret. They’d chosen a Miley Cyrus song, “The Climb,” about striving against the odds to reach the top of a metaphorical mountain. The song had never really resonated with Gayle before. But in this setting, it took on a piercing poignancy. A hundred voices rang out in harmony. Some were husky, some were shrill, but they were all on key and utterly earnest when they sang, “I can almost see it / That dream I’m dreaming / But there’s a voice inside my head saying / ‘You’ll never reach it.’”
Gayle’s eyes glittered. She turned away while Mimi buttered Eli’s dinner roll; she didn’t want her mother to see her cry. Eli wasn’t watching either of them. He was focused entirely on the singers as they belted out the chorus, about the inevitability of hardship and loss—and the power of hope.
Watching the group sway together in rhythm, Gayle thought, Next time, I’ll let him sing.
Twenty
Confrontation
By gathering so many people with Williams in one place, the convention had attracted researchers of all kinds: geneticists, neuroscientists, linguists, sociologists, and psychologists, among others. An entire hotel floor became a pop-up lab for studies of cognition, musicality, and sociability in Williams. Grad students eagerly recruited subjects in the halls. Gayle signed Eli up for a study on anxiety, which struck her as timely, given that his recent irritability seemed to have come to a head at the convention.
The problem was that Eli couldn’t quite understand or articulate his feelings, and he was even less able to identify what caused them. So while the researcher, a post-doc clinical psychologist named Lauren, asked him a series of questions, he instantly grew bored and began spinning restlessly in the rolling desk chair she’d put him in.
Lauren asked Eli to respond to each question with one of four responses: “Sometimes,” “Often,” “Always,” or “Never.”
“The first question is ‘I worry about things,’ ” she began. “Do you worry?”
“Yeah . . .” Eli said, spinning clockwise in his chair and contemplating the ceiling. “Um, I really miss my home today.”
“You do?” she asked with concern. Eli spun counterclockwise.
“Eli, can you look here?” she asked. “Do you worry sometimes, oft—”
“I was really worried sometimes,” he said quickly.
“Sometimes—” Lauren began.
“Yeah,” he interrupted.
“—often, or always,” she continued.
“Often,” he amended, mid-spin. “How are you?”
“I’m good,” she said. “Are you scared of the dark?”
“I am scared of the dark,” he repeated in monotone. If Gayle had been allowed to sit in during the study, she would have explained that he was not afraid of the dark—not always, often, or even sometimes. Eli routinely wandered around his pitch-black bedroom at night, bumping into furniture instead of turning the light on. But Lauren had guessed anyway, from his distracted manner, that his answers were unreliable.
“Do you feel afraid?” she asked.
“I feel afraid of monsters,” he said, nodding.
“Monsters! That’s hard. Are you sometimes afraid? Often afraid?”
“Often,” he echoed.
“Always afraid?”
“I’m ALWAYS afraid of monsters.”
“Yeah,” Lauren said. “Monsters are a big deal. Eli, what else are you afraid of?”
“I’m afraid of . . . I’m gonna be . . . What I’m afraid of is . . .” he began, looking around the room as if searching for something to be afraid of. Then he gave up. “What time is the surprise? You’re gonna tell me?” She had told him that he would get a surprise when he finished the test, and now he was impatient to be done.
“Are there other things that you’re afraid of?” Lauren persisted.
“I don’t like scary stuff,” he offered.
“Scary stuff? What’s scary?”
“There’s monsters, there’s skeletons,” he listed. “They’re spooky!”
If she had been there, Gayle would have cut in again to tell Lauren that the opposite was true: Eli loved Halloween and the monsters and skeletons it entailed. He played with toys like his Scary Screechers year-round.
“What about loud noises?” Lauren suggested.
“Loud noise is kaboom!” Eli said.
When Gayle came to collect Eli, Lauren conf
essed that she hadn’t been able to get much useful information from him, but she gave Gayle a survey to fill out from her own perspective. Gayle did so after dropping Eli off at day camp, while sitting in the lobby with Mimi.
“ ‘Is your child afraid of the dark?’ ” she read aloud. Her options, like Eli’s, were “Always,” “Often,” “Sometimes,” and “Never.”
“Never,” she checked.
“ ‘What is your child afraid of?’ ” she read, and thought for a minute. She tapped her pen against the ring on her middle finger, a silver tarantula studded with black gems.
There were several blank lines next to the question: enough room for a list. But Eli wasn’t scared of the things most kids were scared of. He had never worried about a monster under his bed or a bogeyman in the closet. He knew they were supposed to be scary, which was why he had named them for Lauren. But he wasn’t scared of them himself. He had gone through a phase earlier that year when he became so preoccupied with Halloween props—skeletons popping up from coffins, monsters jumping out of dark corners—that he’d spent hours at a stretch looking them up on YouTube.
Gayle had wondered whether his insouciance about ghouls and goblins was simply a part of Williams. Maybe not fearing strangers translated into not fearing anything, she thought. But that couldn’t be true, since she knew that many kids with Williams suffered from debilitating phobias. Even the young man looking up clown videos in the Sheraton lobby had been terrified when he came across one in a haunted house. Still, the absence of fear could simply reflect Eli’s poor cognitive abilities. Maybe, she thought, he just didn’t know enough to be scared.
She hardly let herself consider the possibility that he might take after his mother. Gayle, a lover of horror movies and a devotee of Edgar Allan Poe and Stephen King, was fascinated with the macabre and the occult. When she was a teenager, her own room could have passed for a Halloween prop warehouse. She still collected Día de los Muertos figurines and other morbid souvenirs.
The Boy Who Loved Too Much Page 24