At first Eli was outraged that she’d stayed with the other parents instead of coming with him. He refused to join the rest of his group while they sat in a circle, singing.
“Where’s my mom?” he complained loudly. “I can’t sit!”
“You’re a big guy,” said the counselor who was leading the session. “You can sit without her.”
“Be a big boy!” echoed one of his fellow campers, her tone earnest and encouraging. Eli shook his head.
“We can’t sing without her,” Eli said gravely.
“I think we can,” said the counselor, and she began the song again. When everyone else started singing, Eli got so caught up in the music that his resistance dissolved and he chimed in.
By the end of the day, he had made a full reversal and come to relish his newfound freedom and the unsupervised time with his friends. That night, after the campers had sung songs around the campfire, roasted marshmallows, brushed their teeth, and gotten into their pajamas, Eli was still so eager for more time with “his boys,” as he now referred to his three bunkmates, that he implored Gayle to join the other parents for the adult campfire, a social hour that began when the kids were in bed. Baby monitors in each of the cabins gave parents the peace of mind to venture the hundred or so feet to the fire. The other Algonquin Cabin mothers had gone every night, but Gayle had never joined them. Once again they urged her to come along. This time Eli joined in their urging.
“You can go, Mom,” he said encouragingly.
“Oh, I can?” she said, chuckling. “You trying to get rid of me? What would you do if I went?”
“I could go to sleep!” he promised, bouncing a little as he sat on the edge of his bed. “You could wake me up tomorrow when you come back.”
She laughed again. “Oh, I don’t think I’d be gone that long. It’d be nice if I found a reason to stay out all night.”
But in the end she stayed in. It was one thing to leave Eli in a structured setting with a counselor; it was another to leave him in a dark cabin with no adult oversight. And she wasn’t here to make friends, after all. She was here so Eli could make friends.
Long after the boys were snoring, though, Gayle lay awake in the dark, wondering if she was missing out. Every so often she heard a faint peal of laughter from the group gathered in the glow of the fire outside. How could they be so relaxed when she felt so wound up? Did parenting a kid with Williams come more easily to everyone else? She reminded herself that this was her first time here and that almost all the other parents had been here before. Maybe it did get easier.
* * *
AT BREAKFAST THE NEXT MORNING, Gayle was surprised to hear that the counselors had noticed some improvement in Eli’s behavior. Without Gayle’s supervision, he had earned beads in nearly every session. Louie stopped by their breakfast table to congratulate Eli on his well-decorated lanyard. Gayle praised him, too, but she couldn’t help wondering whether the quick turnaround meant she had contributed to his earlier inability to sit still and follow directions. Maybe she had telegraphed her own fears that he would act up, and he’d simply fulfilled her expectations. He did seem less anxious today. Maybe time away from Gayle was a vacation for him, too.
The turnaround wasn’t complete, of course. As Eli shoveled cereal into his mouth, he asked Louie, “When are we gonna have lunch?”
“How about those Froot Loops, Eli?” Louie replied, ignoring the question and peering into Eli’s cereal bowl. “What does the red one taste like? Is it different from the green one?”
Eli spooned a red Froot Loop in his mouth and considered it.
“Yeah,” he concluded. “It tastes different.”
Louie turned to Gayle. “He’s doing a lot better,” he said. “He’s a lot less in the future. When I talk to him, it’s not so much about the fireplace and the fan. It’s more about what’s going on now. Even if it’s about cereal—that’s legit.”
Encouraged by his progress, Gayle sent Eli off to his daytime activities alone again. While he sang songs and made crafts, she joined the other parents in a roundtable discussion of the challenges of raising kids with Williams.
Since the campers ranged in age from six to twelve, the discussion topics varied from Sesame Street to sanitary pads. Some parents could speak to both topics at once, since early puberty—in children as young as eight or nine—was a common Williams symptom.
The parents shared their frustrations about doctors who didn’t correctly diagnose or treat their kids, and teachers who didn’t know how to teach them. They bemoaned the birthday parties their kids weren’t invited to, and the invitations to their kids’ own birthday parties that went unanswered. They discussed ways of dealing with the anxiety their kids had now, and mused about the ways they would treat it as it worsened in adulthood (as it tended to, combined with the depression many adults with Williams suffered). Talk turned to their children’s futures: Would they live independently? Would they find meaningful work? Would their lives be fulfilling?
One woman feared that basic life skills would forever elude her son.
“He’s nine now, and he still puts his shoes on the wrong feet,” she said. “I have to tie his laces.”
Several mothers jumped in to suggest shoes with Velcro. Gayle had made the switch long ago for Eli. The hand-eye coordination necessary for tasks like tying shoes might never fully develop, one woman explained, but it didn’t mean people with Williams should need someone else to help dress them.
“Why try to force them to tie shoelaces if they don’t have the dexterity?” the woman said. “You can survive without shoelaces. My grandmother has arthritis; she hasn’t tied a shoelace in years.”
Kathleen said she was constantly adapting her expectations for Mark and trying to get him to revise his own expectations for himself, based on his abilities.
“After all his time in hospitals for heart surgery and angioplasty, Mark decided he wanted to be a cardiologist,” she said, shaking her head. “You never say, ‘No, you can’t be a cardiologist.’ You say, ‘Why do you want to do it? What appeals to you about that job?’ I don’t see my son as a cardiologist—that would be kind of scary. But you have to think outside the box. If he likes helping people, what’s a way he can do that?”
After the family took a Disney cruise one summer, she fantasized about Mark one day finding a job on a cruise ship, doing something hospitality-related.
“He loves Disney, and I wouldn’t have to worry about housing,” she said. “But now he wants to be a school principal. What can I say? I think he’d do a better job than his current principal.”
Several moms said they didn’t expect their children ever to move away from home. They’d resigned themselves to being caregivers for life, sacrificing retirement dreams and trading empty-nest syndrome for eternal motherhood.
“I see my retired friends going on cruises and I think: ‘That will never be me,’ ” one woman said glumly. “If I go on a cruise, my son’s coming with me.”
But others shared anecdotes about young adults with Williams who lived with at least a modicum of independence. One woman knew of four young men with Williams whose parents had pooled their money to buy a house where the men could live together. They hired part-time caregivers to help keep things running smoothly. Gayle jotted this down in her notepad. A little flower of hope blossomed at the prospect. But she couldn’t allow herself too rosy a vision of Eli’s future. Allowing that he wasn’t the lowest-functioning kid with Williams, he certainly wasn’t among the highest. He might never reach the point where he could live without constant help and supervision.
Someone in the group brought up court-appointed guardianship, a term Gayle knew well from her years of research into disability rights. Unless parents applied for legal guardianship when their kids turned eighteen, their adult children could be held accountable for the sometimes dire consequences of bad decision-making: entering into ill-advised but legally binding contracts, for example, or opening joint bank accounts with unscrup
ulous acquaintances. Having Williams syndrome didn’t free them of responsibility in the eyes of the law. Guardianship gave their parents a say in contracts, credit lines, and other life choices, including health care decisions. Gayle was already planning to apply for guardianship of Eli.
The issue was not merely hypothetical. In 2015 a twenty-eight-year-old man with Williams was arrested on charges of aiding a would-be domestic terrorist, John T. Booker Jr., in his plot to detonate a thousand-pound car bomb at a Kansas military base. Booker, a twenty-year-old Kansan who’d proclaimed ambitions of joining the Islamic State terrorist group, was arrested before the plot could go forward; so was the man with Williams, Alexander Blair, who FBI officials said had known about the plan and had even given Booker $100 to rent a storage locker for the explosives.
Blair’s attorneys argued that his disorder had made him especially open to Booker’s friendly overtures—and vulnerable to his manipulation. “Mr. Blair, who has a genetic condition known as Williams syndrome, rarely made friends,” they wrote in a court document. “He was lonely and receptive to Booker’s interest in talking and being friends.” But the attorneys entered a guilty plea after Blair confessed his involvement to FBI agents, saying, “Did I like it? No, I didn’t. But [Booker] asked me for help, [so] I helped him.”
A judge sentenced Blair to fifteen months in prison, the minimum allowed by federal guidelines, despite acknowledging that the punishment seemed excessive and that he didn’t believe Blair posed any danger to the community. He said he’d been touched by the number of letters he’d received from Williams parents across the country, which partly influenced his decision to give Blair the lightest possible sentence, rather than the maximum of five years.
Although Blair still lived with his parents, they weren’t his legal guardians. And while guardianship, a civil procedure, doesn’t negate criminal liability, it can serve as evidence that one is unable to make informed decisions—which could conceivably help in cases like Blair’s.
To Gayle, guardianship was a no-brainer. But she was surprised to hear one of the other mothers argue against it. And then doubly surprised when several more murmured their agreement.
“If you get guardianship, you’re responsible for everything your kid does,” the other mother said. “If he commits a crime, you can go to jail for it.”
This didn’t jibe with Gayle’s understanding of guardianship. In fact, attorneys who handle guardianship say that no one has ever gone to jail for a crime committed by their ward: that would violate the guardian’s constitutional right to due process.
But even if the other mother had gotten the facts of guardianship wrong, Gayle was stunned by how easily she seemed to shrug off responsibility for her son. Gayle objected on principle.
“If my kid committed a crime, I would go to jail,” she blurted out. “What am I going to do, let them lock him up?”
The woman gave Gayle a look, then closed her eyes and shook her head.
“My son could be doing something right now that would change his life forever,” she said. “That doesn’t mean it has to ruin my life.”
Gayle pressed her lips together. She couldn’t imagine a path that diverged from her son’s, leaving him in the rubble of his own ruined life while hers moved forward.
“He’s my son,” she said quietly. “Our lives are going to be connected for a long time.”
* * *
THE QUESTION GAYLE REALLY WANTED to ask in the roundtable discussion was: How do you handle what puberty does to our kids? But after the heated debate over guardianship, the opportunity never came up.
The people she’d asked before, other mothers of teenage boys with Williams, always laughed nervously and said something along the lines of “I just let my husband handle that.” Gayle often felt like the only single mother in the special-needs community. That couldn’t be true, especially if the divorce rate was as high among special-needs parents as it was sometimes reported, but she couldn’t figure out where the other single moms were hiding. Probably at home, she thought, exhausted from working full-time and raising kids by themselves.
But she hoped she might find someone here who was willing to speak frankly about the subject. Puberty seemed to be rearing its awkward head more obviously with every passing day. She had noted with alarm that the last time Eli hugged the hourglass-shaped Amy, he lingered too long. Then, when Amy pulled away, he made a surreptitious adjustment to his pants. It was a quick, flicking motion—too quick for Gayle to swat his hand away, as she would have liked.
The next time Gayle found herself alone in the cabin with Kathleen, she seized the moment. Considering that eleven-year-old Mark had the thick leg hair of a thirty-year-old man, she guessed that Kathleen must have had some firsthand knowledge of puberty’s effects.
“I was wondering,” she began, walking over to where Kathleen was folding clothes on the edge of her bed. “Have you noticed Eli kind of touching himself lately? He’ll hug someone and then touch himself, real quick. He just kind of puts his hand there.”
Kathleen continued folding, her expression unchanged. “We had that problem when Mark was in fourth grade,” she said, and without embarrassment told Gayle about her son’s classroom erections. Mark, immune to the self-consciousness most teenagers have about their changing bodies, had made no effort to hide them. “We got several notes home from his teacher. We talked about it with him, but it just took a while to get under control. But in fifth grade we didn’t get any more notes, so I think it’s passed.”
Gayle swallowed hard. Getting a note like that from Eli’s teacher was one of her worst fears. It would probably mean that other kids in the class had noticed it and said something to the teacher. She would worry that her son had become a pariah. But Kathleen seemed to shrug it off.
“Well, I haven’t gotten any notes from school,” Gayle said. “But Eli’s been doing these full-body hugs, you know? And then he’ll just reach down there. I’ve tried buying him bigger, baggier clothes . . .”
“Yeah, looser clothes definitely help,” Kathleen said. “We bought him different underwear, not too tight. That helped.”
Gayle smiled uncomfortably. “I know he’s starting to, well, explore his body. I’ve told him he just needs to take some privacy, and he’s been good about it. He’ll just say, ‘I’m going up to my room for a while.’ I’ve told him if he has any questions, to let me know.” She grimaced and then went on. “You don’t want to think about it. But you do have to think about it.”
“I know—it’s true,” Kathleen said. She sighed and rearranged a pile of clothes in her open suitcase. “I have my husband talk to him about that stuff, but that’s a little harder for you, I bet. He’ll say he’s going up to his room, and I just pretend he’s up there playing video games.”
“And you have to be careful not to freak out, or let him think you think it’s a bad thing, or he’ll feel ashamed,” Gayle added.
Kathleen nodded. “And I was careful to say, ‘If you need privacy, go into your bathroom.’ If you say ‘Go to the bathroom,’ they might think it’s OK to do it at school or in other people’s houses.”
“Exactly,” Gayle said. She paused, examining her hands. “I just wanted to make sure that’s a phase that’ll go away.”
“Oh, yeah,” Kathleen said brightly. “But it took about a year. He might still hug people, but mostly he goes for the handshake or the fist bump. Although he just told one of the counselors he has a crush on her. Which is still not really appropriate, but at least it’s not a hug.”
Gayle nodded, smiling a tight smile. She worried that the phase might not have been as over as Kathleen thought. She thought about the way Mark had perked up at their earlier discussion of sex ed. Just because she’s not getting notes about it doesn’t mean it’s not happening, she thought, and then blanched at the realization that the same could be true for Eli. At the roundtable discussion, she had heard mothers complain that their daughters were overwhelmed by the stress and physical burden o
f menstruation when, at eight or nine, or even at eleven or twelve, they had the maturity of kindergarteners. Eli was at the same maturity level, Gayle thought.
She wondered if the complications of puberty were more onerous for girls or for boys. Either way, pumping adolescent hormones into what was essentially a five-year-old’s brain was a recipe for trouble.
* * *
ON THE FINAL MORNING OF camp, Eli sat in the cafeteria, waiting for Gayle to bring his food, when he spotted Susie at a nearby table. He waved at her, grinning his squinty smile.
“Hi, Susie!”
Not seeing Gayle, Susie did not answer. She gave Eli her trademark glare. This time Susie’s mother noticed and intervened on Eli’s behalf.
“Susie, he’s saying hi! What do you say?”
“Hi,” Susie said tersely. It was all Eli needed. Even this much reciprocity made the encounter a success in his book and marked Susie as a great friend. When Gayle later asked Eli which of his new friends he would miss the most, Susie was at the top of the list.
“You’re going to miss Susie?” Gayle asked. “Why?” She tried to keep the judgment out of her voice. It crept in anyway, but Eli didn’t seem to notice.
“She’s my friend,” Eli answered without hesitation, as if this were obvious.
“Oh, yeah? What did she say to you?”
“She said, ‘Go away.’ ”
“So why is she your friend?”
“Because I like her!”
“So someone is your friend just because you like them?” Gayle smiled in spite of herself. “Oh, my sweet boy.” It was both touching and troubling to learn that Eli would miss the person who least wanted his friendship as much as he missed the boys in his cabin, whose mutual affection was truly heartfelt.
Gayle couldn’t help but suspect that an attraction Eli couldn’t articulate might have helped push Susie to the top of his friends list. But it didn’t discount the fact that he had forged a real connection with his bunkmates, Mark in particular. The night before camp ended, Eli and Mark had a heart-to-heart in their pj’s that was one of the longest conversations Eli had ever had with someone his own age—and which didn’t center on vacuum cleaners. It did, of course, touch on vacuum cleaners, but it delved more deeply into the boys’ innermost thoughts and ambitions. They shared their excitement about the prospect of becoming teenagers, which they both agreed would open new, though vaguely defined, doors in their lives.
The Boy Who Loved Too Much Page 15