Other studies show that, on average, children act more kindly, more generously, and with less hostility toward siblings with Down syndrome than toward typically developing siblings. They are also more compassionate and mature. This is true even though siblings of mentally retarded children can suffer social ostracism and are at elevated risk of emotional and psychological problems. DS and non-DS sibling relationships are both warm and courteous, stripped of the volatility of relations between equals. Play between non-Down’s siblings and their DS counterparts is more hierarchical and may contain less laughter. Yet writing in Newsweek about her brother with DS, Colgan Leaming said, “My brother is not his disability. He is a teenager who loves sports and PlayStation, who cares a little bit too much about his hair and is a little bit too confident, who is kind to every person he meets, who makes you laugh so hard your stomach hurts. He’s a boy just like anyone else. Kevin does not have ‘special needs.’ All he needs is a chance.”
Sibling responses can rely on minimizing the disability, or on celebrating it, or on some combination of the two. Which mode gets used has something to do with the dynamics of a given family, and something to do with the severity of the affected person’s deficits. It is easy to focus on the tales of people with DS who are triumphantly high-functioning, whose parents take great pleasure in how smart and successful they are within the parameters of the illness. Given how much less these children are likely to attain than typical children, however, to universalize intelligence and achievement as a measure of worth is in some ways to deny who they are. They are not so bright and can’t accomplish so much by general standards, but have real virtues and are capable of personal fulfillment. Many parents of people with DS began their conversations with me by saying how super-high-functioning their children were, and I began to wonder how it was that I saw only parents of such high-functioning kids. When I began talking to their children, I found that some of them were extraordinarily intelligent and advanced given their condition, and that many others had a few things at which they excelled, from which their parents cheerily generalized. The parents’ perceptions of high functioning frequently outstripped the children’s actual level of accomplishment.
Without exception, these parents reported that their children tried hard to please them. Stubborn, intractable when stuck on an idea, the children nonetheless had an eagerness, not as typical of the other disorders examined in this book, that was infinitely moving to their parents. Down syndrome kids are famously sweet-natured, but their less advertised characteristic is that they are troupers.
• • •
Adam Delli-Bovi is at the lower end of Down syndrome function and is also diagnosed on the autism spectrum. At twenty-six, he had a mental age of between four and five, and to meet him after seeing Jason Kingsley speaking at Barnes & Noble made it difficult to believe they had the same condition.
Adam’s mother, Susan Arnsten, was twenty-two and living in Ithaca, New York, when she realized she was pregnant: “It was the late seventies, people were into alternative lives. I knew I wanted children, so since I wasn’t doing anything else, I let it happen.” Her parents hastily arranged a wedding for her. Her new husband, Jan Delli-Bovi, had a nephew with Down syndrome, but it never occurred to them to do genetic screening. Adam was diagnosed the day after he was born. “There wasn’t a single solitary moment when I considered giving him up for adoption,” Susan said. “I started looking, too quickly, at how I could use this challenge for something good. I didn’t give myself time to grieve. My parents thought it was a tragedy, so I had to make it into just the opposite. I was a very young twenty-two.” Susan applied for federal supplemental security income (SSI) for Adam. When the first check came, Susan used it to enroll in a graduate-level course at Cornell called Learning and Children. She started volunteering in a daycare center and became involved with EI.
Susan’s research and learning were critical. “A regular kid will initiate. They’ll learn in spite of anything you do,” Susan said. “But with Adam you had to kind of bring it to him, and he’d meet you maybe a quarter of the way.” Shortly after his first smile, a physical therapist noticed that he was having strange spasms, and Susan took him in for a brain scan, which showed constant myoclonic seizures, which can cause severe retardation. Susan and Jan gave Adam six weeks of shots of ACTH, a stress-related hormone. They went to see a neurologist because Adam seemed to be suffering so badly with the shots. The neurologist said, “If any healing is going to come, it’s going to come from Adam, and really the best thing you can do is pray.”
“There was a very strong commune in this town called the Family,” Susan remembered. “They all had these names that their leader had given them, like Freedom and Grateful and Sought and Ocean and Sojourn. They started doing healing circles for us. They had this wonderful land with this wonderful pond where we would hang out naked with our babies and everybody would swim and talk. They came up with ideas about how his soul was trying to make up its mind whether to be in the world. Even as a newborn, you have to commit to engage in the world, and he didn’t seem to have made up his mind when he first arrived here.”
When Susan took Adam back to the doctor, the seizures were gone. However, Adam had persistent upper-respiratory infections, and he’s largely deaf in his left ear. His vision was weak and one of his eyes wandered. For a while, he wore an eye patch, and later, strong glasses. When Adam reached his first birthday, Susan’s mother bought him a dog puppet, and he loved it most of all his things. “Then he started developing all these weird behaviors,” Susan said. “He really liked to hold things and stare at them. So I’d be really mean. I would take the puppet and put it across the hall. Boy, he would crawl, crawl, crawl, and he would grab it. I would take it away and he would go after it again. Then I started putting the puppet in clear boxes so he could see it in there and would have to figure out how to take it out.”
Susan and Jan conceived another baby—“so Adam would have company,” Susan said. Taciturn, suspicious, beautiful, and full of intensity, Teegan is fiercely loyal to her brother. Adam was in the public school system in his early years, and Teegan was constantly defending him. “If teachers didn’t understand him, I would try to make them understand,” she said. “I used to go into his classroom in the morning and spend time there until I was almost late for my own class. It was much more upsetting to me to see him teased than it was for him to be teased. A lot of the time, I don’t think he even noticed.” Teegan always brought her friends home to see her brother. “I used how they interacted with him as a measure of their character.”
By this time, Susan and Jan had split up, and Susan was doing her best to place Adam in a new school. “The flip side of early intervention is, it sets up expectations and pressures,” she said. “You see all these wonder kids, like Jason Kingsley, or that one who used to be on Life Goes On. Today, I think Adam has reached his maximum potential, but at that time, I felt maybe he wasn’t doing as well as the others because I wasn’t doing as much as other parents. In this little cohort of kids with Down’s here in Ithaca, he was the slowest one.” Susan had gone along with inclusion because it was what everyone else was doing, but Adam knew he didn’t fit in; one day he removed all his clothes during math class. “Kids need to be in places where they feel successful, where they have peers,” Susan said. “Yes, they need role models, but they also need to be role models.” Her parents found a summer camp for children with moderate to severe mental retardation, where Adam has gone every year since, and where his relative level of functioning is sufficient that he can help others.
Susan had grown up in a largely nonobservant Jewish household. She had an affection for Judaism as a culture, but limited knowledge of the Jewish faith. One day, Teegan said she wanted to learn more about Judaism. Susan went to the nearest temple to sign Teegan up for Sunday school and began to bring Teegan and Adam to services. “He loves routine,” Susan said. “He loves schedules, ritual, the singing. Judaism really works for us because it
has struggling and mystical stuff built right into it.” Of the many nuggets of Jewish philosophy she quotes, she rests particularly on the Talmudic notion, drawn from Exodus 37:9, that God exists in dialogue. “In the Torah, they describe building this huge tabernacle out in the wilderness,” she said, “and on top of the vehicle that carries the tablets, they put two angels facing each other, because that is where God exists, between people. The day Adam was born, my life became purposeful, and it has kept purpose ever since. God exists between us. I knew that soon after he was born, but Judaism gave me a vocabulary for it.”
Adam managed to memorize enough Hebrew for a bar mitzvah. Shortly thereafter, Susan met William Walker Russell III, a WASP sound engineer with a recording studio in an old church, and when he saw her interacting with Adam, he fell in love with her. He remembered, “Susan said, ‘I’m a mother of two children; one has Down syndrome and is going to be with me forever. It’s never going to be just the two of us.’” Susan and Will married six months later. “Adam started wanting to dress like me early on, and it was incredibly complimentary to me and incredibly embarrassing to go out in public,” Will said. “It’s like, I’m wearing jeans, a brown leather belt, and a white oxford button-down shirt from the Gap. He’s wearing exactly the same thing. I figured I was in.”
Susan and Will’s marriage coincided with the onset of adolescence for Adam. Adolescence is a challenge when it hits any boy of fourteen, but it’s even harder for someone who is in many ways four and a half. “Will experienced the testosterone stage,” Susan said. “Adam would all of a sudden decide to wreck the place. He would pull the fire alarms.” Will said, “Adam was doing some testing of personal power. When a four-year-old misbehaves, you pick the kid up and you take them to their room. Adam is not portable to Susan. So she developed a way of talking, showing unbelievable patience, and would spend whatever time it took negotiating. One time, he was kicking and spitting. I came behind him in a loving restraint, picked him up, and put him upstairs in his room. I remember the look on Adam’s face—what just happened? That behavior stopped pretty quickly.”
Susan loves to dance, and she took up contact improvisation, which grows from the belief that dance is a way of communicating. A collective called Dance New England puts on a weekly session where people can dance barefoot and freestyle in an alcohol-free, welcoming environment. Susan had long realized that most of her communication with Adam was nonverbal, so this community had particular resonance for her. “Other people with Down syndrome are very social, very outgoing,” Susan said. “He is not so much. A lot of the reason that I like the dance forms that I do is it gives you a way of interacting and connecting with people without having to talk.” Every summer, the collective would rent a place in Maine on a clothing-optional lake for two solid weeks of dancing, with a strong emphasis on community-building and volunteerism. Adam worked for two hours every day in the kitchen. “Everybody wears purple,” Susan said. “It’s a very nice, affirming place for us. It’s a time when everything Adam has learned during the year coalesces, and it prepares him for the next year.”
When Teegan was in ninth grade, she contracted mononucleosis and spent a long stretch at home, cared for by her mother. “One day, out of the blue, she said to me, ‘You know that I’m always going to have a place for Adam wherever I live,’” Susan recalled. “When she said that, I started thinking about a team of support around Adam, that she is a willing part of that team. She came to that on her own.” To Teegan, it had always been obvious. “In some ways, I was always the older sister,” she said. “Sometimes I was annoyed about having to take care of him on a specific night. But I never wished for a life without him. His thanks is in the form of love, more than gratitude. I know he loves me, which is enough. I wouldn’t trade it for the world.”
Will struggled at times with existing family dynamics. “The primary duo is always Susan and Adam,” he said. “If Susan and I are talking and Adam interrupts, our conversation stops, and there have been times when I have resented that.” The biggest tension when Will joined the house was sound. Adam’s greatest pleasure in life is Broadway show tunes. Shortly after I met Adam, he offered to sing for me. His sound is an enthusiastic monotone hum, like an amplified refrigerator. He usually sings along to his favorite recordings, to which he listens, over and over, at high volume. Will is a sound engineer whose life is in his ears. Adam eventually agreed not to sing in the car when Will was driving; Will figured out how to deal with sound in the house. When I asked Teegan to describe life with Adam, she said, “Slow.” Will concurred. “It’s about Adam time. Just like when you’re hanging with a four-year-old, you give up your agenda. I’ve learned that no one says that nut has to be tightened in thirty seconds. If it’s tightened in five minutes, it’s all the same. Adam is my Zen master.”
Adam completed vocational school, then entered a work program, affixing labels and stamps, and sealing envelopes; when that didn’t work so well, he started volunteering in a soup kitchen, where he puts out the salt and pepper and rolls the silverware in napkins. “Being helpful is one of his values,” Susan said. “In fact, one of the other Down’s mothers said to me that she told her son that she would take him to something but he had to be like Adam. ‘Adam’s always smiling and he listens to his mother, and if you agree to be like Adam, I’ll take you with me.’ So whenever he started being a little disruptive, she said, ‘Are you being like Adam?’ It worked. Adam being a role model. For a kid who is way smarter than him.”
Adam is not allowed any TV or videos on the Sabbath, so he listens to CDs of Broadway musicals on headphones. At dinner on Friday night, he blesses the bread. He does the ritual washing of hands as well. Then he takes a long mineral bath; he loves baths, but because he is prone to fungal conditions of the skin, he can’t take them the rest of the week. “Toileting is still an issue, so we have him on a schedule,” Susan said. “I would like to transition him to listening to his body more; he has accidents sometimes. We deal with his mental age.”
I was curious about what mental age actually meant. “If you think about the level of supervision you might give a six-year-old, or what a six-year-old could do, that’s about what Adam needs,” Susan said. “It might be more like five, in some ways more like four. Because six-year-olds can generally read more than he can and make phone calls and know what to do in emergencies. If the house were on fire and he was watching TV, he wouldn’t leave. Maybe when it got very, very hot. He knows about walking when the traffic light says ‘walk,’ but he doesn’t know to look around and see that a car might be turning. If we’re leaving Adam in someone’s care, I say, ‘Imagine someone who’s been five years old for ten years.’ He’s Mr. Helpful around the house; he does all these things that a five-year-old would never be five long enough to learn.” Teegan added, “If you gather a whole group of six-year-olds together, they’ll have a much wider range of ability than any single six-year-old. So one might have grown up with professional parents in the city, so he knows about computers. Another grew up in the country and knows all kinds of wild plants, and how to find their way around in the woods. If you keep somebody at a six-year-old level for long enough, they’ll expand laterally. That’s what he’s been doing.”
Susan has stopped trying to resolve the contradictions that her life with Adam tosses up. “When he was born, my big thing was I wanted him to be able to communicate. Now I know that even people who don’t talk can communicate.” One birthday, Susan had bought Adam a black felt hat like the ones worn in Fiddler on the Roof. She had bought him a Broadway-compilation CD, and Adam’s favorite song was “One,” from A Chorus Line. At the end of a day in Ithaca, Adam said he had something to show me, and I sat down in the living room. He made Susan find her own hat, he put on the CD, and the two of them did a little Michael Bennett pastiche of the dance from A Chorus Line, lifting the hats, twirling around, kicking at the right moments. Somehow, Adam had learned the moves, and with only minimal prompting from Susan, he did the whole thin
g, a little awkwardly but with charm. Looking at this private cabaret, I was struck by Susan’s insistence on dance as a means of communication, and I thought that what the whole household had achieved was intimacy. Susan’s genuine belief that happiness was a fluid concept seemed to fill the room with love.
• • •
Some three-quarters of intellectually disabled people in the United States live with their parents. “The natural desire of parents to nurture their children during their growing years should be especially encouraged for children whose progress is measured in centimeters,” one study notes. “Whenever families decide that they can no longer bear the burden of care, the transition to a residential placement should be facilitated. Empowerment of people with disabilities cannot ignore those who provide day-to-day care.” The likelihood of placement of younger children with DS depends on the severity of their disability, the extent to which their behavior disrupts the household, and the capacity of the parents’ relationship to withstand the stress of a disabled child. Siblings may need attention their parents cannot muster when someone needier occupies focus; those same siblings may be deeply distressed by the placement of a brother or sister, feeling vulnerable to exile themselves.
One study found that almost 75 percent of parents reported feelings of guilt after placement; half said they felt guilt “constantly” or “every day.” Many feel that placement reflects their failure as parents. When the child who has been placed comes home to visit, families often feel glad and stressed; when the child goes back to his residence, they feel sad and relieved. They feel worse if their child is in a small facility, even though those are usually more humane; small facilities resemble home, and the similarity forces parents continually to reassess their decision to send their child away. When care is provided by a small staff, some parents become competitive with them. Parents most often report that placement has made their functional lives easier, but not their emotional lives. Nonetheless, they seldom bring back children whom they have placed; the tendency is to stick with whatever decision you have made. Investigators note parents’ positive feelings toward placement after they have placed their child; they likewise note the positive feelings of parents who have decided to keep their children at home. To some degree, people who will be happier with a placement are more likely to place their children, and people who will be happier with their kids at home tend to keep them at home. Ultimately, this is also a matter of resolving cognitive dissonance: people adjust their attitudes to fit their decisions so as to avoid internal discord.
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