Is he the problem child here? Gayle wondered. Then someone else’s child would ambush-hug her or throw a tantrum, and she’d remind herself that they all had their own issues. She had her issues as well, she knew, and hypervigilance was one.
* * *
THE COUNSELORS DIDN’T SEE ELI as a “problem child,” as Gayle feared, but it wasn’t entirely in her head that he stood out—even here, surrounded by other kids with a tendency to be overfriendly—in his disregard for social boundaries and his rampant hugging. Some said that his behavioral challenges seemed more severe than usual for people with Williams.
What concerned them more, for Eli’s sake, was his obsessive worry about the future. They’d noticed his tendency to get stuck in repetitive loops, fixating on upcoming events and asking about them endlessly. This, too, was common among kids with Williams syndrome, but Eli had it especially bad. “When are we gonna do crafts?” was still top on his list, followed closely by “When are you gonna light the campfire?” “When’s lunch?” and “When’s dinner?” also saw heavy rotation. The questions never stopped, no matter how often they were answered.
At breakfast on the second day of camp, Louie shared the staff’s observations with Gayle.
“Tell me about it,” she said, nodding. “I was just telling him in the car on the way up here, ‘Eli, you’ve got to learn to live in the now.’ ” She jabbed Eli lightly with her elbow, but he was too busy inhaling a bowl of Froot Loops to respond.
Louie told her that the counselors had brainstormed a musical strategy that might help: a little jingle they’d written just for Eli. “Do you want to hear it?” he asked, turning to look at Eli.
“Yeah!” Eli said.
Clapping his hands on his thighs, Louie chanted, “I’m ready for the here! Ready for the now! Ready for the here, for the here right now!” Then he did it a second time, urging Eli to chime in. Eli sang along, then giggled, pleased as much with the attention as with the song. Gayle smiled, too, grateful that the counselors had gone to so much trouble even if she wasn’t convinced it would effectively ground Eli in the present. When she asked him to repeat it later in the day, he sang, “Ready for here! Ready for now! Ready to go—hooray!” Then he added, “When’s dinner?”
Right after learning the jingle, Eli had a drumming lesson with Louie. He followed Mark and the four other members of the Red Group into the same performance space where they’d had the opening day jam session. Louie sat by the windows, holding a hand drum in his lap.
“What are we doing next?” Eli asked.
“We’re playing drums, Eli,” Louie said.
“No, I mean, what are we doing after drums?”
“I’m just thinking about drums now,” Louie said warmly. “It’s all I can think about, man!”
Louie taught the group Eli’s new song and led them in a spirited rendition. “Are we ready for the here? Ready for the now? Ready for the here, for the here right now?” While the rest of the group chanted, Eli noticed the counselor in charge of arts and crafts passing through the back of the room. He jumped from his seat and rushed toward her, stretching his arm out and waving as if he were hailing a cab.
“When are we gonna do our project?” he asked. She looked startled; she had no idea what project he was talking about. He apparently had big ideas of his own. Before she could answer, Louie jogged over to Eli, put an arm around him, and guided him back to the drum circle.
Louie was dressed casually for camp in a T-shirt and cargo shorts, a hemp necklace, and slip-on shoes. He had kindly eyes, expressive eyebrows, and a quick smile. He also happened to be missing the middle and ring fingers on his right hand. Eli noticed this while Louie went over the rules of the drum session. Louie had just explained what “active listening” entailed when Eli interjected: “Hey! What happened to your fingers?”
“I was born this way, and that’s all I’ve got time to say about it right now,” Louie answered, unfazed, and resumed his instructions. He moved on to a discussion of good manners, but Eli couldn’t stop interrupting.
“What happened to your fingers? What happened to your fingers? What happened to your fingers?!?”
Finally, Louie stopped talking and turned to face Eli. Eli was momentarily silent. Louie looked around the room. In the same unhurried, friendly tone, he asked, “How many people here know that they are a little bit . . . a little bit different? In an awesome, supercool way?”
“Yeah,” said Mark, sitting to Eli’s left, with a smile that crinkled his nose.
The tall girl with Coke-bottle glasses shot her hand up.
“Ooh!” said another girl, waving her hand.
Louie surveyed the remaining three in the group.
“Your hand should be up,” he told a girl whose hands were still folded in her lap.
“Your hand should be up,” he told another.
“Your hand should be up,” he told Eli. “Hands should be in the air! Wave ’em like you just don’t care!”
By now all hands were up and waving. The six kids hooted riotously. Louie raised his voice meaningfully, like a preacher reaching the climax of his sermon.
“And that’s exactly what I like to do!” he cheered, holding his hands aloft. “I was born without these two fingers, but you know what? I like to put my hands in the air and wave ’em like I just don’t care. Because differences are what make people cooler. That’s my opinion. A lot of people share this opinion with me. And those happen to be the cool people in the world.”
Eli was listening actively when Louie resumed his instructions. After the group settled down, they took turns following Louie’s lead and emulating the different rhythms he beat on the hand drum. When Eli took his turn, he lost track of the rhythm and pounded the drum wildly, channeling Animal from the Muppets. But he didn’t ask about Louie’s fingers again.
When Gayle heard about the session later, she wasn’t surprised that Eli had asked about Louie’s hand. He often fixated on physical abnormalities. Gayle was still embarrassed about the way he’d treated a Friendly’s waitress, months earlier, who had severe acne. “What happened to your face?” Eli had asked the girl before Gayle could stop him. “Something bit you?”
What surprised Gayle this time was that Eli eventually stopped asking the question. Louie’s answer evidently appeased him in a way that so few other answers ever had. It was often a mystery to Gayle what would mollify Eli when he got stuck on a question. The key was to intuit the true source of his anxiety. It required the same mind-reading abilities all parents used with their children, especially those too young to articulate complex feelings and desires. But Eli’s thoughts and desires were so unlike Gayle’s that she sometimes struggled to predict them. For example, when Eli asked what time dinner was, he didn’t really care about the time: 6 p.m. meant little to him, since he didn’t read clocks. He was really worried about some other element related to dinner: Will we go out to eat? Will there be a ceiling fan? Will I meet a new waitress? Will I get dessert?
Eli couldn’t always articulate the specific object of his curiosity. In this case, Gayle thought, his question must have had less to do with the anatomical facts of Louie’s hand and more to do with what it meant to be different, with where you fit in the world when you weren’t like everybody else.
She couldn’t be sure exactly how Eli had interpreted Louie’s answer, but however he took it, it satisfied him enough to move on.
* * *
GAYLE WONDERED ABOUT HER OWN behavior at camp, too. Although she focused more on Eli’s anxiety, she could have used her own jingle about living in the now—or at least accepting the now for what it was. And while she knew that anxiety was a near-universal fixture of Williams syndrome, she couldn’t help but think she was contributing to Eli’s fear for the future with her own fears. Eli, an expert reader of moods, must have picked up on her apprehension. But she was unable to shake it.
Why couldn’t she loosen up like the other parents and let Eli wander unsupervised within the boundari
es of this sheltered campground? One defense was that when they returned to Connecticut, he’d be expected to act differently, so she didn’t want to set a precedent of free rein here and then force him to unlearn it later. She knew he’d be unable to tell the difference between a safe and an unsafe environment, between his friends here and those who would exploit him in the real world. But that was true for all the kids at camp, and their parents managed to give them a longer leash than she could tolerate for her own son.
She tried to see the benefits of following their lead and loosening up. After all, camp could be Eli’s one chance to befriend other kids just like him. That connection meant everything to him. And why shouldn’t he get the chance to spend time with his friends unchaperoned? Someday Gayle wouldn’t be around to eat dinner with him, draw spirals for him, and applaud his singing. And someday he might prefer the company of a girl who wasn’t his mother. Maybe even someday soon. Blushing romances abounded among the preteens at camp.
One afternoon in the Algonquin Cabin, Mark asked where Duncan was.
“Wherever the girls are, that’s where Duncan is,” said Amy with a sigh. “My son’s a big mack daddy.” A quick look out the window confirmed this: Duncan was by the pond, swinging on a tire swing with three girls who were eyeing him adoringly.
Duncan had made an impression on a number of the girls here. One of them, Ada, raced to claim the coveted spot next to him at nearly every meal. At the campfire one night, Ada practically elbowed another girl out of the way.
“Move over, honey,” she cooed to Duncan, “so your wife can sit down.”
Amy had warned Duncan not to pay attention to any one girl exclusively but to be nice to all of them. She hoped this would avoid a meltdown like the previous year’s, when two girls at camp both thought they were Duncan’s girlfriend, and then were heartbroken when they discovered each other. In this way kids with Williams weren’t so different from anyone else: despite seeing everyone as a friend, they still valued exclusivity. They wanted the person they liked the most to like them the most.
Amy told the Algonquin Cabin mothers that she thought she had some time before Duncan’s girl problems took on serious proportions, judging by his response to his school’s sex ed class.
“I asked him, ‘How did that go?’ I was thinking, ‘You’re the mack daddy; did you find out anything you can use?’ But he was like, ‘Not good.’ ” She shook her head gravely, miming his response.
She’d asked what bothered him about it, and he had replied, in a horrified whisper, “We talked about vaginas . . . They grow hair on them!”
It had been a relief to Amy. “I thought: ‘Oh, good, we’re not ready for that yet!’ ”
Gayle laughed along with the other two cabin mothers. Mark, who had been listening from across the room, piped up, “I am!”
Gayle was grateful that Eli hadn’t shown much interest in the girls of Whispering Trails. He was definitely not a chick magnet like his bunkmate. Apart from the usual hugging and declarations of love, he hadn’t paid extra attention to specific girls, at home or at camp.
Then, later that day, he met Susie.
He noticed the willowy eleven-year-old in the crowd mingling outside the dining hall after dinner, radiant in the late golden sunlight as she giggled over something with Ada. Eli stopped in his tracks and watched her with an intensity normally reserved for ceiling fans or industrial floor scrubbers. Then he approached, as quickly as his lumbering gait allowed, and threw his arms out to hug her. Without even seeming to fully see him, she turned and ducked out of reach. She looked at Ada and rolled her eyes.
“He’s weird,” Susie said.
Undeterred by the brush-off, Eli positioned himself in front of her again. “Hi! What’s your name?” he said. She ducked away once more. Eli wheeled around her like a planet around the sun. “I’m saying hi!” he shouted. “Say hi to me!”
Susie shook him off and sprinted toward the girls’ cabin. Eli stayed frozen in place, looking stunned. The exchange had blasted cold air into what was otherwise a summertime paradise of brotherly love. Susie, it seemed, was not indiscriminately friendly, as almost everyone else here was. She had selected the friends she wanted, and Eli was not among them. Surrounded by Williams kids, where inclusion had so far been the rule, he suddenly found himself excluded again.
Gayle, too, looked stunned. She had been watching from the edge of the crowd, pretending to listen to a conversation among the grown-ups but secretly keeping an eagle eye on her son. She’d been trying to give Eli his space, to restrain her protective instincts, but now her guard went up again. After watching him effortlessly befriend everyone else he’d met here, she wondered why this encounter had ended so differently—or so normally. She swooped in and put her hand on his back.
“Not everyone likes to be hugged,” she said gently, trying both to ease the sting and to drive home a lesson. But it wasn’t a lesson she had expected to teach here. And it wasn’t a lesson Eli was willing, or able, to learn in any case.
From then on, whenever Eli saw Susie, he followed her like a puppy, pleading for her attention. He learned her name. “Hi, Susie!” he’d call. “Hi! Hi! Hi!”
Often she would curl her lip into an annoyed half snarl, then stalk off. If he followed, she’d hiss, “Go away!” Gayle tried to rein in his pursuit.
“It’s OK,” she told him. “She just doesn’t want to say hi. Leave her alone.”
Although Gayle knew better than anyone how intrusive Eli could be, his request—to be acknowledged—was so meager, and Susie’s rebuffs were so harsh, that eventually she couldn’t help but side with her son. She felt the same urge to defend him that she would have against any bully. It was just that in this case, against all odds, the bully was another kid with Williams.
As they left the dining hall one evening, Gayle and Eli crossed paths with Susie once again. He smiled his big lopsided smile, still hoping to make instant friends. Each encounter, in his mind, was a new chance to win her over. Each time he wiped the slate clean of past snubs. But Susie only scowled and stuck out her tongue at him.
“Hey, be nice to me!” he yelped. Susie stared him down icily, then slowly shook her head.
Gayle turned to her, unable to hold her tongue. “He’s just trying to say hi to you,” she snapped. “You could just be nice. But whatever.”
She instantly regretted her peevish tone. Now it was Susie’s turn to look hurt.
“I don’t want to be mean!” Susie said. “I can’t help it.”
Gayle softened. She wasn’t sure what Susie meant, exactly, but she suddenly saw in her what she so often saw in Eli: the keen desire for approval, especially from adults. Maybe Susie was just mimicking the bratty behavior she’d seen in other, teenage girls, Gayle thought. Maybe she’d learned how to fit in in the real world, and now she couldn’t unlearn it.
“It’s OK,” Gayle said in the gentle tone she thought of as her kindergarten teacher voice. “He just really wants to be your friend.”
“But why did you say, ‘You could be nice, but whatever’?” Susie asked.
“I just meant that you could say hi back to him. But you don’t have to,” Gayle said. Susie appeared to mull this over. Then, looking chastened, she trotted off. Gayle’s cheeks flamed with guilt. I can’t believe I was just mean to a Williams kid! she thought.
The next morning Susie walked by the cafeteria table where Gayle and Eli were eating breakfast. When he saw her, Eli dropped his spoon in his cereal with a splash and waved vigorously. Susie copied him, waving back with similar ardor and mirroring his oversize smile.
“Hi!” she said sweetly. “How are you?” As she walked by, she tossed a disdainful look back over her shoulder. Gayle was shocked. Was that sarcasm? she thought. I didn’t know kids with Williams even registered sarcasm. She felt a little less guilty for having chastised her the night before.
At camp and in general, Susie was a rare exception to many of the Williams rules. While most people with Williams
have a vibrant sense of humor and a fondness for puns and playful language, sarcasm and irony tend to elude them—but not Susie. She had the elfin facial features common to Williams, along with some visual-spatial problems, but overall she seemed to be of above-average intelligence for someone with the syndrome, and much worldlier. It was possible that she, like the girl in Julie Korenberg’s study at the Salk Institute, was missing all but the GTF2I gene, making her less gregarious and overfriendly than others with Williams. But it was much more likely that she simply fell on the high end of the regular Williams spectrum and that, through a combination of nature, nurture, and luck, she had developed more sophisticated social skills than Eli and many others. Few people with Williams, after all, had mastered the art of saying one thing and meaning another.
Eli, for one, never doubted his new friend’s sincerity. He didn’t hear the sharp edge to her voice or notice the daggers she shot with her parting look. Instead he smiled blissfully, acknowledged at last.
Twelve
Learning Curve
When she signed up for camp, Gayle had hoped Eli would benefit from being around other kids just like him. She hadn’t expected to learn so much from being surrounded by other moms just like her. The most salient lesson so far was that not all parents policed their kids’ behavior as closely as she did. It was possible, and maybe even preferable, to give Eli more room to find his own way in the world.
She wasn’t sure how well she could put this lesson into practice, though. Midway through the week, when she found herself still stuck to his side, she concluded that she’d need to start applying the same vigilance to her own behavior that she normally did to his. This meant forcing herself not to hover over him—even if he risked an unpleasant, unchaperoned run-in with Susie. She started by staying away from his camp sessions, where she had lately been the only parent tagging along.
The Boy Who Loved Too Much Page 14