* * *
AS THE ONLY PARENT AT the lunch gathering whose kid was fully grown, Claire became a sort of mother hen to the group. When she talked about her daughter, Gayle and the other mothers paid rapt attention, as if she were a prophet who had been granted a vision of life after adolescence and had brought back good news. Gayle listened carefully for proof that Emily had once been just like Eli. She parsed Claire’s words, searching for echoes of her own experience and for evidence that Eli might be capable of following Emily’s path.
Claire and her husband had adopted Emily when she was just a few days old and seemingly healthy. Eighteen months later, after being referred to a cardiologist because Emily had a heart murmur, they learned that she had Williams syndrome. Because this was before a blood test could definitively diagnose the disorder, they were lucky that the cardiologist had just written a paper on Williams and knew what he was looking at.
Claire spoke about her daughter with obvious pride. When she talked about the adoption, she told the story of how badly she had wanted a child—she couldn’t have one herself—and how grateful she was to find Emily. She believed a stroke of fate had brought them together.
“We were led to this child,” she said. There was no trace of regret that the healthy baby she thought she was bringing home turned out to have a life-changing disability. Claire spoke instead of Emily’s skill as a singer, of her effervescent personality, of the goals she had achieved and the obstacles she had overcome.
For the past two years, Emily had lived in an apartment about half an hour away from her parents, which she shared with a roommate who also had Williams syndrome. An aide came to help them for a few hours every day, and another spent the night there every night. The aides’ salaries were subsidized by the state, but her parents paid the rent themselves.
“It’s expensive,” Claire said, “but she’s our only child. What else is our money for? It’s for her.”
The move had been Emily’s idea, in fact. She’d wanted to strike out on her own, away from her parents, for a long time. But only near the end of her twenties did she seem mature and capable enough to live apart from them, and even then only with supervision. In some ways she was still childlike, Claire acknowledged.
“She’s turning thirty-two on Wednesday, and she can act like a perfectly normal thirty-two-year-old one day, and the next day act like a two-year-old,” she said. “In the apartment, with her support staff, that’s presented a challenge, because there are things she and her roommate have to do on a daily basis, and Emily doesn’t always want to do them. She’s been used to being an only child, living at home, and although she wants to be independent, the responsibility that comes with independence is something she fights every once in a while.”
But Emily handled the basics of adulthood impressively. She bathed and dressed herself, prepared her own meals, and, most importantly, refrained from hugging strangers. On her best days, people who met her for the first time didn’t realize she had a disability.
Until recently, she’d worked at a supermarket, bagging groceries, but she had lost her job in a wave of layoffs.
“Bagging groceries was great for her, because she got to talk to people,” Claire said, “but it wasn’t the job I would have picked for her, because I always thought she could do more. She could certainly work in an office, doing light tasks, like making photocopies. I think she would be very good in the children’s room of a public library. She’s a very good reader. She reads at a sixth- or seventh-grade level. So I can see her putting books away in a library. But, you know, if it comes up, she’ll take anything at this point. A job is the only piece of the puzzle that’s missing, really.”
Gayle tried to picture Eli bagging groceries, or making photocopies, or putting away books. He was so easily distracted that it was hard to picture him doing any one task for more than five minutes. It seemed like too much to hope that, like Emily, he could venture into the world on his own one day, going off to work in the morning and coming home at night to his own apartment. It was the bare minimum that Gayle had expected her child to do, before Eli was diagnosed: leave the nest.
And while she now expected to care for him indefinitely, she had heard tales of burnout among Williams parents whose kids never left the nest. Caring for an adult with special needs could be much more difficult, and less rewarding, than caring for a child with special needs. Not only did adults with Williams have their own set of challenges, they were more likely to be a challenge for their parents, fighting the help they had once accepted gratefully. Strong-willed and set in their ways, like most adults, they often chafed at the limits their parents imposed.
Gayle had heard of parents who’d once planned to keep their children at home perpetually, but later changed their minds and sent them to assisted-living facilities instead. Even the most energetic parents sometimes wore out after years of uninterrupted caregiving and the exhaustion and frayed nerves it entailed. Gayle tried not to judge them too harshly. Let’s see how I feel in ten years, she thought.
But while she was sometimes frustrated and impatient with Eli, she couldn’t imagine coming to the end of her rope the way some parents had described. At gatherings and on the WSA Facebook page, they recounted constant battles with their adult kids over the minutiae of daily living—nagging them endlessly to brush their teeth, take a shower, put their dirty dishes in the sink. More than just resisting their parents’ prods, they often erupted in fits of temper. One mother said that even asking her daughter to comb her hair was enough to provoke a tantrum. The mother couldn’t help becoming exasperated, despite her best efforts to stay calm, and sometimes both she and her daughter ended up in hysterics.
Despite wanting to tear her own hair out sometimes, Gayle had never gotten to the point where she’d even consider sending Eli to live in an institution rather than at home. She wondered if it was inevitable that someday she would. Then again, maybe he wouldn’t want to live with her forever. And maybe one day he’d be capable of leaving home and caring for himself. That possibility struck Gayle as both liberating and unsettling.
* * *
NOT EVERY ADULT WITH WILLIAMS achieves Emily’s level of independence. Even the few who do often feel frustrated that they can’t be fully autonomous. Those who live alone typically depend on others—their parents or hired aides—in at least some ways.
A woman named Dawn, roughly the same age as Emily and similarly high-functioning, lived in a state-run independent living facility in Massachusetts. She had an apartment she shared with a roommate who had special needs (but not Williams). There was support staff on-site, but for the most part the women were left to their own devices to cook, clean, and care for themselves. Dawn, whose IQ was nearly normal, worked part-time as a receptionist for a social services agency.
True to the Williams nature, she was bubbly, energetic, and kind—a fast-talking force of friendliness. She was also ambitious, and had met many of the goals she’d set for herself, including winning a medal as a roller skater in the Special Olympics. But many other ambitions eluded her. She wished she could drive a car, for example, but she knew her limited spatial awareness would keep her from ever getting a license.
“I don’t know when something’s in my way,” she explained. “I’m not that great at walking, either. I get lost easily. If it’s not a straight line, forget it.”
This meant she relied on public transportation to get around, but she felt constricted by the limitations of mass transit. She had to plan ahead to go anywhere, and she might still have to ask someone to pick her up from a bus stop. She couldn’t just wake up one morning and decide to drive to the beach. (This was a key component of adulthood, in her mind, and of the freedom it entailed: being able to go to the beach on a whim.)
Dawn felt similarly constrained by the fact that her parents controlled her bank account. They paid her bills and gave her an allowance, but she wished she could be in charge of her own expenses, even though she readily admitted that she was
an impulsive spender and couldn’t balance a checkbook. She dreamed of having her own credit card. Once she even accepted a credit card offer that came in the mail without telling her parents. It struck her as a rite of adulthood and an essential element of true independence.
“I just thought, ‘I want to be able to go into a store and see something I like and just get it. And not have to ask anyone for permission,’ ” she said. When the first bill came, her parents discovered her deception and canceled the card.
She met regularly with a therapist to talk through her frustrations, which sometimes overwhelmed her. On an existential level, even deeper than her disappointment over not driving or having a credit card, she lamented that she was unlikely to raise a family. She’d had a boyfriend once. They met in a life skills program for young adults with Williams, but the relationship ended when his parents moved to Florida—and he, dependent on them, went too.
* * *
FEW PEOPLE WITH WILLIAMS SYNDROME marry, and when they do, Dr. Pober has described it as more a marriage of families than of partners, since the couples struggle to manage their home and their lives without assistance. Some people with Williams have had children, although most weren’t aware that they had the disorder and risked passing it on. A number of people have been diagnosed with Williams only after their children were. One high-functioning woman with Williams (who had already been diagnosed) married a man who didn’t have the disorder and chose to take the risk of having kids, with her family’s support. She gave birth to twins, both of whom had Williams. She and her husband and children lived with her husband’s parents, who helped them through the challenges of raising two kids with special needs. She didn’t regret her choice, saying, “Who better to help a child with Williams than someone who has it?”
Many doctors disagree, however, and advise people with Williams against having children. Some parents of people with Williams seek to sterilize their kids, partly because of the chances of passing on the syndrome and partly because their kids, even once fully grown, aren’t responsible or capable enough to raise children of their own. Parents of girls, in particular, often want to spare their daughters the burden of menstruation as well as annual pelvic exams and Pap smears, which can be trying at best and traumatic at worst for women with Williams. Some skirt the issue with long-term birth control, such as IUDs or injectable hormones like Depo-Provera. But injections have to be repeated and IUDs require maintenance, and neither is a foolproof guarantee against pregnancy. That point is often moot, since many adults with Williams are unable to make the interpersonal connections that would lead to sex or marriage. But some parents of low-functioning girls petition their doctors for hysterectomies or tubal ligations anyway, citing the risk of rape. A pregnancy would only compound the anguish in that case, they argue.
Sterilization is an extremely sensitive issue for people with developmental disabilities, however, given America’s appalling record of forcing it upon them. When social Darwinism was at its height, from the beginning of the twentieth century to the 1960s, more than 60,000 Americans were involuntarily sterilized, including those with intellectual disabilities along with criminals and the mentally ill. A 1927 Supreme Court ruling embraced the practice in terms that leave a bitter taste in the mouths of most Americans today. “It is better for all the world,” Justice Oliver Wendell Holmes famously wrote, “if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. Three generations of imbeciles is enough.”
Latent in the discussion of sterilization is the question of whether people with developmental disabilities have the same inherent worth as everyone else. Up until startlingly recently, many Americans believed the answer was no—and some, as Andrew Solomon observes in his book Far from the Tree: Parents, Children, and the Search for Identity, still think so. It’s no secret that, for much of the last century, people with disabilities faced routine abuse and neglect; less well-known is how often they were killed by their own caregivers. Solomon believes that the number is higher than we might expect, given that families tended to hide their disabled children from the outside world and that many viewed them as essentially nonhuman. Some people proclaimed publicly that filicide, in those cases, was a legitimate and even benevolent option because it put a “defective” child out of his misery and spared the rest of the family the burden of his care. Writing for the Atlantic in 1968, the ethicist Joseph Fletcher argued that there was “no reason to feel guilty about putting a Down’s syndrome baby away, whether it’s ‘put away’ in the sense of hidden in a sanitarium or in a more responsible lethal sense. It is sad, yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down’s is not a person.”
The shadow of this dark era still looms over the medical community. As a consequence, parents often find themselves restricted in making choices about their kids’ reproductive health even when legal guardianship empowers them to make all other medical decisions. Some states do not permit the sterilization of people with intellectual disabilities at all; others require court approval for each case. In some states, hospital ethics committees are tasked with deciding whether such procedures are justified and whether patients are truly incapable of making informed decisions for themselves. These additional layers of scrutiny were meant to protect people with disabilities, although some bioethicists say that they may now work against the best interests of those very people by making it harder—and sometimes impossible—for their parents and physicians to ease their physical discomfort and prevent the devastating burden of unplanned pregnancies.
Many parents of people with Williams never consider sterilization, though, and some strongly oppose the idea. Along with those who object for religious reasons, there are some who simply find it unconscionable to deny their children the fundamental right of reproduction, especially if their kids dream of having their own families one day, as many do. It’s a discussion that tends to get heated in online forums and in gatherings of the Williams community.
Opinions differ even among people with Williams. Some high-functioning people with Williams, like Dawn, feel that not having children is the right choice, even if it’s also a heartbreaking loss. While a big family was what she wanted most in life, Dawn couldn’t stand the thought of giving her children the health issues and learning difficulties that Williams entailed, especially when she already knew how hard it was to live with the disorder.
But that left her searching for a purpose in life, which she did with soulful introspection. She still looked forward to being married someday, but she didn’t know if she’d feel fulfilled without children.
“I’m trying to find out what my mission in life is,” she once wrote on her Facebook page. “Most of you know I can’t have kids due to Williams syndrome. It is very painful not to be able to carry on and give my somewhere-out-there husband what he wants. I wanted to have a son who could play football and baseball, a son who could go to church, a son who could give me grandkids. I’m not married yet, but this is something I do think about. I look at myself right now and don’t have a blanking clue as to what to do with myself in life. I want to get married; I know that. I am a happy aunty. I just want to be able to give more to people and myself.”
She longed to share her love with someone else; she yearned to take care of another living being. Like many people with Williams, she loved animals, and often mentioned her desire to adopt a cat. But her family talked her out of it, since the responsibilities of cat care were still more than she could reliably manage. In the end, she settled for a guinea pig.
Dawn offered both a best- and worst-case example of adulthood with Williams. In addition to the warm, compassionate Williams personality, she had the intelligence and self-control to take advantage of opportunities that eluded others. But her intellect and introspection also hurt her, making her acutely aware of everything she couldn’t do bec
ause of her disability.
If Emily had suffered likewise, her mother didn’t share it with the group at lunch. Claire described her as well adjusted and happy—grateful to be in charge of her own life, for the most part. Emily was close to her roommate, and thereby found the social contact she craved with someone other than her parents. And although she recognized that she couldn’t do everything a typical thirty-something could do, she didn’t seem to resent it.
“Eventually they do accept it,” Claire promised. “They do. You just have to do the best you can to give them as normal a life as possible.”
Seventeen
Progress Report
Gayle’s meeting with Eli’s teachers near the end of his seventh-grade school year confirmed what she had already begun to recognize: teen angst was taking a heavy toll on Eli. Since the tech-ed incident, she had been getting weekly progress reports listing the number of times he hugged other students, touched himself inappropriately, refused to obey a teacher, yelled at someone, or cried. The reports showed that his teachers hadn’t stopped Eli from hugging any better than Gayle had, despite a growing arsenal of disciplinary tactics—and that his intrinsically cheerful, agreeable nature was becoming increasingly overshadowed by prickliness and defiance.
While in the past Eli’s teachers and aides had focused on rewarding his good behavior, lately they spent more time punishing the bad. Eli’s antics now regularly landed him in the time-out room, although that didn’t seem to deter him from acting up. If anything, punishment only riled him. He sometimes exploded in fits of flailing and screaming. When told he couldn’t do something he wanted to do, he vented his frustration destructively, sometimes violently. Once he angrily tore a sheet of paper into pieces. Another day he knocked his desk over. On a particularly bad day, he kicked his teacher in the shin. It was the first time he’d kicked her, but she was starting to get used to him hitting and head-butting her. When he lashed out physically, he had to be restrained by a team of teachers trained in crisis intervention, who wrestled him to the ground and held him until he calmed down.
The Boy Who Loved Too Much Page 20