The Boy Who Loved Too Much

by Jennifer Latson

  “What would they tell them?” Gayle asked. “ ‘Watch out for these guys: they’re going to hug you and ask inappropriate questions’?”

  Eli, surveying all the smiling, hugging people wearing WSA name tags, was beside himself with joy. For a moment he was stunned into inaction, unsure how to approach the social smorgasbord. People with Williams were everywhere: seated in the lobby’s wingback chairs, milling around the registration tables, lining up for the elevator. A few braved the escalators, defying the limits of their depth perception with tentative steps onto the moving stairs. Some squealed with joy at recognizing friends from previous conventions. Many erupted into song.

  Gayle watched Eli’s eyes widen and knew she was about to lose him in the crowd, so she grasped his shoulders and guided him toward the conference room that was the assembly point for the day camp he would attend while she and Mimi sat in on panels.

  The cacophony was even louder in the confined space of the conference room, where more than a hundred teenagers were gathered, wearing red T-shirts that would, in theory, make them easier to herd when they left the hotel on a field trip. The room was a blur of red forms in motion, running, jumping, dancing. Several kids—including Mark, his friend from camp—rushed over to greet Eli.

  “How’s it going, buddy?” Mark asked, leaning in to give Eli a hug. Gayle opened her mouth to object, then caught herself, realizing that in this case it was perfectly appropriate for Eli to hug his friend. She had been so vigilant about the no-hugging rule for so long that she had rewired her own instincts.

  She felt even more sheepish after meeting the volunteers who would take charge of Eli during the day: Henry and Nicole, a brother and sister in their early twenties, whose nineteen-year-old brother had Williams syndrome. Gayle began to explain that they’d need to keep a close eye on Eli, that he would wander off and hug anyone he saw, that he was highly vulnerable—and then she stopped herself. Of course they know he’s vulnerable, that he’s a hugger, she thought. All these kids are. Nicole vowed not to let Eli out of her sight.

  When Gayle returned to Eli, he was sitting with Mark and four other boys, talking animatedly. Seeing his mother, he preempted her good-bye by saying, “I don’t want you to sit with me.”

  She laughed. “OK. I won’t sit with you.” She turned to look at him before she walked out the door, but he wasn’t watching her. He was focused on his friends.

  Soon the crowd of kids broke into their assigned groups for the day’s outing to Fenway Park. Eli, thrilled to find himself paired with Nicole, tried to engage her in conversation.

  “Where’s your daddy?” he asked her in a friendly, inquisitive tone.

  “He’s with my mom,” she said.

  “Where’s your sister?”

  “I don’t have a sister.”

  “That’s your uncle?” he asked, pointing to Henry.

  “That’s my brother.”

  “You’re so beautiful,” he said.

  “Thanks,” she said. “You’re very nice.”

  “You want to eat with me tonight?”

  “I have to eat with my family,” she said.

  “Aww,” he whined. “I’m going to miss you.”

  Just then another young woman walked by, and Eli’s attention drifted.

  “Where are you going?” he asked the woman, another volunteer chaperone.

  “Same place you are,” she said. “Fenway Park.”

  “I miss you,” he said sadly as she walked past.

  “But you just met me!”

  Free from his mother’s admonishments and his schoolteachers’ behavior charts, Eli grew even more girl-crazy than usual. Outside the hotel, waiting for a tour bus, Eli spotted yet another pretty teenage chaperone. “How are you?” he asked.

  He reminded himself aloud: “Handshakes and high-fives!” Then he hugged the girl anyway, too close and for too long. She giggled nervously and gently pushed him away.

  “We’re not going to hug like that, Eli,” Nicole reminded him. But by now all Eli’s restraint had dissolved in the humid summer air. “I love you!” he called after the girl.

  Without Gayle there to rein in Eli’s public displays of affection, he revealed what he was like when he lost all self-control. In the Fenway Park gift shop, while they waited for the tour to start, Eli managed to break free from Nicole and run up to a tourist in a “Cheers!” T-shirt. Eli reached out wordlessly to shake the woman’s hand. She accepted it and smiled at him.

  “Hello there!” she said with amused surprise. He tickled the underside of her palm with his fingers. She gave him a puzzled look. Her husband, standing nearby, put his arm around her.

  Nicole pulled Eli back by her side as they started the tour. But he hardly looked at the historic ballpark; he was focused instead on the people around him. While Nicole took in the “Green Monster”—Fenway’s famous left-field wall—Eli stared instead at the plump calves of a heavyset woman just ahead of him. She wore shimmery, flesh-colored tights that shone invitingly in the sunlight. Eli was transfixed. If Nicole hadn’t been setting a good example by looking attentively at the tour guide, it would have been obvious to her that Eli was contemplating a sneak attack.

  He crouched, looking down as if he was about to tie his shoe. Then he inched toward the woman and stretched his hand out slowly, glancing at Nicole first to see if she was watching. When he was close enough, he sprang forward and grasped the shimmering calf firmly in his hand. He squeezed.

  The woman to whom the calf belonged shrieked and kicked her leg forward, turning simultaneously. Her face was pinched with anger and embarrassment. Eli straightened and looked away. Nicole whispered forcefully in his ear. The woman’s scowl relaxed slightly. She was a volunteer, too, and knew enough about Williams to understand the urge to touch. Eli hung his head low enough to make a convincing show of remorse, although his cheeks were flushed and his eyes were wild. It was a look of pure bewilderment, as if he himself didn’t understand what he was doing or why.

  * * *

  WHILE ELI HUGGED AND SQUEEZED his way through Fenway Park, Gayle and Mimi sat in over-air-conditioned conference rooms listening to Williams experts present their findings. Dr. Pober was the lead presenter for several panels, including one on health issues in adults with Williams. Gayle, curious as ever to know what the future held for Eli, attended this one.

  One of the most pervasive and dangerous problems of adulthood, Dr. Pober said, was obesity. Even skinny kids with Williams seemed to have a greater-than-normal risk of becoming heavy as they aged. She projected a line graph comparing the average height and weight of people with and without Williams as they aged. For people with Williams, height plateaued well below the normal line but weight continued to rise.

  “You can see that the weight here is at the fiftieth percentile or greater,” she said, beaming a laser pointer at early adulthood. “But height is at the third percentile. So they’re heavy for their height. This is a change over time from their body type as younger people. Most kids are skinny, but about two-thirds of the adults we studied were overweight or obese.”

  Then again, she added, almost two-thirds of older Americans in general were overweight or obese. So it wasn’t obvious whether the weight gain itself was a factor of Williams or simply of the unhealthy American lifestyle. The distinct way people with Williams carried their weight, however, was definitively correlated with the disorder.

  “Most adults have a pear-shaped distribution,” she said. “It’s in the hips and the butt and extends into the legs. Whether there’s a genetic vulnerability to gaining weight, we don’t know; but when they do gain weight, it takes this distinct shape.”

  It didn’t help that many adults with Williams took anxiety medication and antidepressants that increased their appetites and made it harder to lose weight, she said. But carrying the extra pounds exacerbated other Williams-related health problems, such as heart trouble and sleep apnea.

  “Weight is one of the most pressing issues I see in the
adult population,” Dr. Pober said. “Some of us gained the freshman fifteen. They have the same thing when they hit thirty and it’s like, ‘I’m an adult; you’re not going to tell me what to do, what to eat, anymore.’ It’s a huge problem that has a domino effect on other medical problems.”

  A woman in the audience raised her hand to say that her son never seemed to feel full: he kept eating long after he should have stopped. A number of other parents nodded. One mother said she had to lock food in cupboards or it would disappear when her back was turned. Dr. Pober said that researchers were looking into whether there was something wrong with the satiety sensor in people with Williams or whether this was simply another manifestation of their poor impulse control. A different genetic disorder, Prader-Willi syndrome, causes dysfunction in the hypothalamus and other parts of the brain associated with feeling full, so people with the disorder are constantly, ravenously hungry and tend to become morbidly obese. But the correlation isn’t as clear in Williams syndrome, Dr. Pober said. A healthy diet and regular exercise are usually enough to keep weight gain under control in Williams.

  Gayle raised her hand to ask a question that had been bothering her ever since she saw a segment about Williams on the ABC news show 20/20 a year earlier.

  “That 20/20 special said there was a lowered life expectancy for people with Williams, but that was the first I’d heard of it,” Gayle said. Everyone in the room knew which show she meant, including Dr. Pober, who had appeared on it. “Is that true?”

  Dr. Pober dismissed the notion. “Nobody’s done any studies of the kind you’d need before you can draw those kinds of conclusions. I have Williams patients in their sixties and seventies and eighties,” she said. “I do think that not as many Williams adults make it to their sixties and seventies as is the case in the general population, but I don’t think you can say in the glib kind of way they did that there is a lower life expectancy. I think there’s a younger subset that, tragically, don’t make it out of infancy due to severe cardiac defects. Some older folks have passed away earlier than average. For some the cause has been vascular; for some it’s been gastrointestinal. But the conclusion they came to about that wasn’t backed up by science.”

  Gayle nodded, although she wasn’t entirely comforted by the doctor’s qualified no to her question. She often heard about people with Williams dying suddenly, at all ages, from cardiac complications.

  She took some solace from knowing that Eli’s aortic stenosis was so mild he had never needed surgery, as many with the disorder did. But his cardiologist had told her that it was a progressive condition that could change for the worse at any time, leaving her in limbo between his annual checkups.

  Later in the day Gayle and Mimi attended a presentation on treating the behavioral symptoms of Williams, which was led by Christopher McDougle, a psychiatry professor at Harvard Medical School and the director of the Lurie Center for Autism at Massachusetts General Hospital. McDougle suggested some alternative medications for anxiety and depression, given that SSRIs, which increase serotonin levels in the brain, didn’t work as well on people with Williams as on the mainstream population.

  “SSRIs are great for a lot of typical people who have depression, panic disorder, social anxiety disorder, post-traumatic stress, OCD . . . They work for lots of things for lots of people,” he explained. “Half the world is on SSRIs. But many times they make people with Williams worse: angry, irritable. They increase agitation and disinhibition, that kind of thing. That’s exactly what we see with autism; if you give them an SSRI, they get worse.”

  Part of the problem could be that both people with autism and people with Williams have abnormal serotonin levels, or that they process the neurotransmitter differently from the rest of us. Some studies have found lower-than-normal levels of serotonin in the central nervous systems of people with autism, compared to higher-than-normal levels in Williams syndrome. But the issue is contentious; most scientists agree that it’s probably not that simple.

  In his talk, McDougle recommended drugs that had worked well for his autistic patients: atypical antipsychotics, particularly Risperdal and Abilify.

  Gayle jotted down the names. Eli’s psychiatrist had just taken him off the SSRI Celexa because it made him even more socially uninhibited than usual, as well as edgier and crankier. Gayle had wondered if the drug contributed to his misbehavior in school. However, she was reluctant to experiment with powerful psychotropic drugs. So were others in the audience, who asked about the effectiveness of homeopathic remedies and cognitive-behavioral therapy. McDougle responded politely.

  “Some people say, ‘I don’t want to go near medicine if I don’t have to.’ It’s always fine to try nondrug treatments first. Behavior therapy, consequences—all that’s fine, and a lot of times it can be helpful,” he said. “But there’s a point for many people when that’s just not enough. What I say to parents is: you will know when it’s time. These drugs can be life-changing, because sometimes these behaviors can keep a family in their house. You can’t go to a restaurant. You’re housebound.”

  Gayle raised an eyebrow and exchanged a look with Mimi. This was her life he was describing. She underlined the names of the drugs.

  * * *

  AFTER THE PANELS HAD ENDED and the day campers had returned from Fenway Park, Gayle and Mimi took Eli to dinner at the Prudential Center mall, a short walk through a connecting corridor from the Sheraton. Making a lap around the food court, they passed a man with Williams syndrome, in his forties or early fifties, sitting at a table by himself. Like the adults Dr. Pober had described earlier that day, he was obese and noticeably pear-shaped. His hair was dark and curly, like Eli’s, but wildly disheveled. He wore a dirty T-shirt that strained to accommodate his stomach. While he sat eating pizza and drinking a large soda, people at neighboring tables, mostly teenagers without Williams, snuck glances in his direction.

  When she heard laughter, Gayle wondered if it was at the man’s expense. But he didn’t seem to notice; all his attention was focused on the pizza.

  Gayle felt a pang of excruciating pity. Eli was already chubby: would this be him in thirty years? Part of her wanted to shout at the laughing teenagers, to shield the man from derision the way she’d want to shield her son. Part of her, though, tried to put the scene in perspective. After all, he was doing what she hoped Eli would be capable of one day: taking care of himself. Clearly he had been able to navigate the mall and buy his dinner without help. He’d probably even broken a twenty and gotten the right change—or maybe he’d been shortchanged, but, either way, he’d gotten a meal. Still, Gayle couldn’t get over how unkempt and vulnerable to ridicule he was. Didn’t he have parents? Where were they?

  She bought Eli a chicken sandwich and cut it into pieces to make it easier for him to pick up. She watched him eat, trying to see him from a stranger’s perspective. He was dressed as stylishly as any teenager at the mall, wearing army-green cargo shorts and a black T-shirt with the logo of the punk club CBGB. But there could be no question that something about him was different. He squirmed in his seat, kicking his legs, which didn’t quite reach the ground. His gaze flitted feverishly from person to person as he scanned the room, then looked down at the floor.

  “I need to scrub this floor,” he exclaimed happily, eyeing the dingy gray tiles. “It got so dirty.”

  He inhaled his chicken sandwich and then helped himself to half of Mimi’s meal. With his mouth still full, he reached for Gayle’s grilled cheese sandwich.

  “Eli!” Gayle said. “You’ve already had your meal.” He slowly pulled his hand back, his eyes locked on the sandwich.

  “What’s next?” he asked when he finally gulped down the last of Mimi’s food. “We can have dessert?”

  Since Gayle had promised him dessert if he behaved at camp—and since she hadn’t heard about the calf-squeezing episode—she gave in to his request for a hot fudge sundae from Ben & Jerry’s. He immediately knocked some of the whipped cream onto the table, then stu
ck his finger in it and licked it off.

  Gayle moved to grab his hand, then sighed and shook her head. “OK, eat it however you want,” she said. “Eat it off the table. Do it your way.”

  When he had finished his sundae, and his face, hands, and forearms were covered in ice cream, Gayle scrubbed him down with napkins. He pulled away from her. “No, Mom! I’m ready to go now!”

  “I’m just trying to clean you up,” she said. “This is what I want you to get more independent with.”

  On the way back, Eli decided that he had been so good that he deserved a trinket, too.

  “I’d like a little something,” he said as they walked past the maze of storefronts leading to the Sheraton. “I like Best of Boston,” he said, naming the gift store they were passing, with a display of stuffed lobsters, candy lobsters, and plastic lobster-claw grabbers.

  “I like that grabber,” he said, pointing to one.

  “I don’t think so, Eli,” Gayle said. “You can’t get something every time we go out.”

  They walked on.

  “Ooh,” Eli said, stopping to point at a kiosk of Hello Kitty merchandise. “That’s nice.”

  Gayle tugged him along by the hand. Eli knew there was another gift shop near the hotel, but Gayle dragged him past it without slowing down. She stopped at an ATM to get some money, and Eli’s face clouded when he saw the door to the hotel just ahead and realized that all his trinket opportunities were behind him.

  “I don’t want to go back to the hotel!” he shouted. Gayle ignored him and slid her debit card into the machine. Eli stomped his foot and moaned. Mimi looked at him with concern.