The Boy Who Loved Too Much

by Jennifer Latson

  Mark’s thirteenth birthday would coincide with his older brother Austin’s graduation from high school, which he was dreading. So when he talked about becoming a teenager, he tended to flash forward in his imagination to his eighteenth birthday. He knew Austin would have finished college by then, and presumed he’d have moved back home. And turning eighteen, even more than turning thirteen, signaled adulthood and its limitless possibilities. Most notably it seemed to mean you could have friends over whenever you wanted.

  “Eli, do you want to come over to my house sometime?” Mark asked. “When Austin’s done with college?”

  “Where’s your house?” Eli asked.

  “It’s a brick house. In Wisconsin,” Mark said, perched on the edge of the bed and rocking slightly with excitement about the plan. Eli sat next to him.

  “What kind of fireplace do you have at your house?” Eli asked seriously.

  “A real kind,” Mark said, nodding affirmatively. “You can warm your hands on it if you come over.”

  “Cool!” Eli squeaked.

  “I might be thirteen then,” Mark said, confusing his timeline. “I’ll be twelve in September, so you have a long way to go.”

  “I want to be a teenager. I’ll scrub this whole floor,” Eli said, waving a hand toward the carpeting.

  “When I grow up, and I’m done, I want to come back here, and work here, and build a house here,” Mark said.

  “I like you, Mark,” Eli said.

  “Me too,” Mark said.

  “When I come over, I can see your floor?” Eli asked.

  “I’ll go to Meijer and get a new Wii for us to play with,” Mark promised. “And a Nintendo DS.”

  “Can I sweep the floors?” Eli asked, indifferent to the offer of video games.

  At that moment Eric and his mother entered the cabin. Mark turned to them and feverishly related his plan.

  “I’m going to live here when I grow up,” he said. “When I’m eighteen.”

  “You are?” Eric’s mother asked. “What are you going to do in the winter?”

  Mark thought for a moment. “Just get a TV,” he said, shrugging.

  “Mom!” Eli shouted, although Gayle was sitting on her bunk just a few feet away. “When am I coming back to Mark’s house?”

  * * *

  ALL THE WAY HOME FROM camp, Eli fixated on the idea of becoming a teenager. The thrill of being part of a tribe, surrounded by his Williams peers, had left him aglow, and he was even chattier and more cheerful than usual on the trip back. He seemed to see the social inclusion of his week at camp not as an isolated experience but as a preview of his life to come. He sang improvised songs about his new friends, some of which were ballads devoted exclusively to Susie.

  Although Gayle prompted him a few times to sing the song about living in the now, he quickly reverted to his habit of asking endless questions, most of which now centered on the topic of turning thirteen.

  “When am I going to be thirteen, Mom?” he asked for the first time just after leaving the campground. She reminded him of his birthday: February 5.

  “And then I’m going to be a man?” he asked.

  “Well, maybe not immediately,” she said. “Give it a little time.”

  Once again, none of her answers seemed to satisfy his curiosity, either about when he’d be a teenager or about what life would be like once he was. Each answer prompted another question: “I’m going to get taller?” “I can use the Tennant 5400?” “I’m going to go on dates?”

  Since Gayle had some of the same questions herself, she was ill-equipped to answer. So the questions kept coming, from Michigan through Ohio, Pennsylvania, and New York. Just across the Connecticut state line, the car came to a stop in a traffic jam on the Merritt Parkway. It seemed to intensify Eli’s anxiety, as if the traffic were holding him back from his progress toward adolescence.

  “Mom, can I be a teenager? What time?” he asked with renewed urgency.

  “You’ll be a teenager on February 5 at 5:38 p.m.,” Gayle said.

  “And then what kind of school am I going to go to?” he asked.

  “Oh, you’ll still go to the same school,” she said. “You won’t go to high school until you’re fourteen.”

  Eli nodded sagely, as if he’d already known this, but was just double-checking. He picked a brown crayon out of his crayon box, gripped it tightly in his fist, and swirled it across a page of his coloring book, obliterating the lines.

  “I can’t wait to be a teenager,” he said.

  Gayle looked back at him and smiled, thinking of the rosiness of his vision of adolescence. In his mind it meant boundless joy, visiting friends, scrubbing floors—all the activities he believed he’d been denied by virtue of being twelve and not thirteen.

  Her own vision was cloudier. So much of normal adolescence centered on the drive for independence, but she wasn’t sure what role, if any, independence would play in Eli’s teenage years. It was part of the frustration many teens with Williams endured: the impulse to pull away from their parents coupled with the immaturity and vulnerability that meant their parents couldn’t responsibly let them go. They depended on their parents for so much more than the typical teenager did—particularly transportation, since few sixteen-year-olds with Williams, even among the highest-functioning, could learn to drive a car—and there was a good chance that their dependence would carry over into adulthood. Gayle thought of all the things she still did for Eli: bathe him, get him dressed, help him in the bathroom. He was unlikely to be able to perform these tasks on his own by February. Would she still be helping him with them in five years? Ten, even? When would he be a man, and what kind of man would he be?

  She was dreading the approach of adolescence: the ravages of hormones, the cruelty of other teenagers. For a moment she wished she could jump inside Eli’s head and enjoy the view of thirteen through his eyes, without the sense of foreboding her own genes wouldn’t let her escape.

  Thirteen

  The Note Home

  Eli’s hormones attacked almost as soon as he returned from camp. Once an equal-opportunity hugger, he was now targeting women almost exclusively and especially favoring the curvaceous. The first time he hugged a woman and walked away with an obvious erection, Gayle was mortified. Then it seemed to happen every time. He would stand there chatting happily with the woman, unaware of anything objectionable about his appearance, and Gayle would blanch and usher him away.

  The secret life of teenage boys slowly revealed itself to Gayle, who had grown up without brothers and was unschooled in the particulars of male adolescence. She turned to Google to find out what half the population knows by high school: teenage boys have as many as ten to fifteen erections a day (plus another seven to ten in their sleep). She was relieved to read that her son’s reactions were normal. In this area of development, at least, he was on par with his peers, despite being so immature in almost every other respect. The problem was that, lacking the social inhibitions and the sense of shame that drives most teenage boys to devise subtle methods of covering up, Eli was a stage on which puberty played out for all to see.

  His body is developing, but his brain isn’t, Gayle thought. When school started, she bought him longer shirts and looser pants, hoping to camouflage what he never bothered to conceal. He couldn’t help it, she knew. But she worried both about his changing preference in whom to hug and how he went about doing it. He had always given bear hugs, but now he seemed to press himself more deliberately against the women he singled out, and for as long as he could get away with. He took advantage of his stature, which put him exactly at breast height on most women, to lean his head against their chests. The new technique catapulted his behavior over the line between innocent and offensive.

  One of Gayle’s greatest fears was that Eli would be seen as a predator, the way she’d heard others with Williams had sometimes been. One young man, while waiting with his parents at a bus stop, hugged a woman he didn’t know and was nearly arrested on assaul
t charges. The woman called the police; the man’s parents called Dr. Pober. When a police officer arrived, the geneticist was able to explain the details of Williams syndrome, and the young man wasn’t charged. But he could have been, Gayle thought when she heard the story. If the man’s parents hadn’t been there, or if the officer hadn’t been patient enough to consider the extenuating circumstances, he could have ended up in a jail cell. Worse, the woman—or an irate boyfriend or husband—could have responded violently. These were the dangers waiting on the other side of the Great Divide between children who hugged everyone and adults who did.

  Of course, people with Williams were much more likely to be taken advantage of than vice versa. Dr. Pober had never come across a single case in which someone with Williams forced himself on someone sexually. “That would never even occur to them,” she said. “These are people who wouldn’t dream of harming someone.” But she could recall many cases in which people with Williams were sexually abused themselves. According to the Massachusetts Disabled Persons Protection Commission, more than 90 percent of people with developmental disabilities—male and female—experience some form of sexual abuse at some point in their lives. And the open, uninhibited affection shown by people with Williams makes them even more vulnerable to abuse than people with other forms of developmental disability. A survey that researchers believe is vastly underrepresentative found that 10 percent of adults with Williams had reported sexual assault to the police, while another 10 percent said they’d been assaulted but hadn’t filed formal charges. Dishearteningly, some people with Williams who’ve been abused have been discouraged from filing charges because of their disability. One boy with Williams was molested as a six-year-old by a teenage boy. While he was able to tell his parents and the police what had happened, the district attorney’s office declined to take the case because they didn’t think he would come across as a reliable witness in court.

  While Gayle knew of no surefire way to prevent Eli from being abused, apart from never letting him out of her sight, she hoped to keep him from becoming a menace to women by instituting a strict no-hugging policy. Where she had once tried to simply limit Eli’s hugging, she now enforced a zero-tolerance standard. She told him that only handshakes and high-fives were acceptable outside their immediate family. Even his cousins now fell into the no-hugging zone.

  Eli didn’t quite embrace the new policy. He couldn’t deny knowing about it, because his mother repeated “Handshakes and high-fives only” whenever they went out—to a restaurant, say, or to practice for his special-needs soccer league. Instead, he would walk up to a woman and announce “Handshakes and high-fives!” before leaning in for the hug he craved. Most people usually hugged back, which made Gayle’s job harder. As she detached him from the uninformed, she’d ask them to resist if he tried to hug again, explaining, “I’m trying to teach him it’s not acceptable to hug everyone.”

  It could be as difficult to enforce the policy with others as it was with Eli. One woman, the mother of one of his soccer teammates, just laughed.

  “But he’s so adorable! I can’t say no to him!” she said, ruffling Eli’s hair while he beamed at the praise.

  You won’t think he’s so adorable when you see his pants blow up like a circus tent, Gayle thought.

  None of the other parents of boys with Williams syndrome seemed to have found the secret to outmaneuvering puberty, either. One mother acknowledged that she had found no way to stop her teenage son from grinding against people.

  “I’ve told his friends just not to let him rub up on them,” she said when Gayle asked how she dealt with the problem.

  That’s not exactly the solution I had in mind, thought Gayle disconsolately. She was still reeling from Kathleen’s admission that she’d received multiple notes home from the principal about Mark’s erections. These guys have enough trouble fitting in without walking around all day with a boner, she thought. She hoped that, with carefully chosen clothing and the no-hugging rule, Eli could minimize the potential damage to his reputation. But she knew that school was the one place where she had no control over his behavior.

  * * *

  THE E-MAIL FROM ELI’S SPECIAL-EDUCATION teacher popped up in Gayle’s in-box on a Monday afternoon in late January, less than three weeks before Eli’s thirteenth birthday. In brief but heart-stopping prose, it began: “Time-Out Report: In Tech Ed Class, Eli was rubbing against girls and touching his penis.”

  Gayle came as close to throwing up as she had since she first learned the term “Williams syndrome.” Her fears about Eli’s conspicuous sexuality seemed to have suddenly come true. This is worse than getting a note home about an erection, she thought. Much worse.

  The wording of the note left much to the imagination, forcing Gayle to conjure an image of her son as she’d never want to see him. Did he have it . . . out? she wondered. Wouldn’t his aide have stopped him from getting that far?

  Her mind jumped to the consequences Eli might face. Would he be allowed in tech-ed class ever again? What about his other mainstream classes? She knew he couldn’t be kicked out of school, since federal law forbade public schools from turning students away on the basis of a disability. (This was part of the 1975 Education for All Handicapped Children Act, renamed the Individuals with Disabilities Education Act when it was updated in 1990.) But he could be removed from the classes he attended with his nondisabled peers if his behavior distracted or endangered others.

  Gayle studied the e-mail, searching for clues about what would happen next. The immediate result had been that Eli’s aide led him out of the tech-ed class and back to his special-ed classroom. There, the note said, Eli “became upset again when redirected. He pushed a chair and began to swear.” He went to the “time-out room,” an empty room where students who misbehaved were sent to sit alone and think. He spent twelve minutes isolated in this room. Gayle knew it had seemed like a lifetime to Eli, for whom social deprivation was the worst form of torture.

  Gayle called Eli’s teacher, who clarified that Eli hadn’t actually been grinding against girls. Instead, he’d simply stood too close to them and let his shoulder rub against theirs. It was relatively inconspicuous; the girls didn’t seem to notice, but his aide did. Gayle had seen him do this before, too. He craved contact so much that when he was barred from hugging, he sought other ways to connect with people that wouldn’t get him in trouble.

  The touching had been fairly subtle as well; he had given himself the same kind of adjustment Gayle had seen after he’d hugged Amy at camp: a quick flick that his aide might not have noticed if Gayle hadn’t forewarned her.

  Gayle was at once relieved, then exasperated with the teacher for writing it up so dramatically. It was still troubling, she thought, but nowhere near as troubling as she’d initially feared. The teacher assured her that there was no question of removing Eli from his mainstream classes. But, she said, there was the question of how to keep the problem from escalating.

  Gayle set up a meeting with Eli’s education team—his teacher, aide, physical therapist, occupational therapist, speech/language therapist, and behaviorist—to address what they were now euphemistically calling “the tech-ed incident” and the changes it signaled. Gayle had already heard from Eli’s aide that he had been standing too close to the girls in his gym class, although no one had written up a report on that. Nor had anyone yet proposed a specific plan to address the problem. Gayle hoped they could brainstorm some solutions together. But what they came up with troubled her.

  First, they urged Gayle to stop dressing Eli in sweatpants. The soft, loose fabric, it turned out, was both stimulating and terrible at hiding the effects of its stimulation. Gayle cringed. She would never have put him in sweatpants in the first place if she hadn’t thought the baggy material would help camouflage an erection. It always bothered her to see kids with special needs looking unkempt. She hadn’t wanted to give his peers one more excuse to ostracize him, so she’d kept up with the trends in middle school fashion and ma
de sure to keep his haircut current and his clothes stylish. Now she’d been sending Eli to school in sweatpants for weeks, unaware that her plan had backfired.

  The meeting got worse from there. One of the therapists speculated that Eli might need a physical release for new sensations when they arose at school. She suggested that Eli could ask for private time and spend a few minutes alone in the bathroom if he found the urge to touch himself too distracting. There was a private bathroom he could use, she said helpfully, so he wouldn’t have to worry about other boys figuring out what he was up to.

  Because Gayle was one of the few mothers in the world with an adolescent son who was completely open and honest with her, she knew that Eli had explored his changing body but never with any definitive sense of purpose. That’s the way she expressed it to the therapist. There was so much delicacy in the way both women talked around the topic that a casual observer might not have realized they were discussing masturbation. Then the therapist put things more directly.

  “If he doesn’t know how to do it,” she told Gayle, “you might have to show him.”

  Gayle stared at her, dumbstruck. She knew the therapist wasn’t joking, but she couldn’t believe she was serious. What mother could ever be expected to do that for her kid? she thought. I’d do anything for Eli, but that’s just not even on the table.

  The woman clarified that she meant Gayle should show him an instructional video, but Gayle was still disturbed. She mined her sense of obligation to her son, probing for the feeling that she owed this to him. Sure, I’d be uncomfortable, she thought, but would he? Does his need to know this outweigh my squeamishness? She knew Eli needed extra help to navigate this stage of life and that, without male friends, a brother, or an active father figure to steer him through it, she was essentially his only guide. Still, she recoiled from the thought of being the one to instruct him on this most intimate of acts. It just seemed wrong.