Far From the Tree

by Solomon, Andrew

  Placement is a process, not an overnight decision. Preliminary separations, through respite care and day or weekend programs, may allow parents to explore how placement will feel; they may, equally, allow parents to delay placement by alleviating some burden of care. In addition to their gradual psychological adjustment to placement, parents face pragmatic challenges in researching appropriate facilities and figuring out how to apply for the preferred ones. One person who has worked on this topic described how a mother told him, “I could never put my child in one of those places!” Two years later, she placed him in the exact setting that had so offended her. “Calling the Regional Center was the scariest phone call I ever made,” one mother said. Many people with DS are placed between eighteen and twenty-one, at the age when typical children are moving out of their family houses; some experts feel that creating a life course that mimics the stages for typical people is advantageous.

  The proportion of children and youth in institutions has gone down by about three-quarters, but the total number of people in institutions has gone up, because life spans have lengthened. Though big state institutions still exist in thirty-nine states, they have mostly given way to a vast array of smaller, more intimate, community-based care facilities. More than half of parents visit only one facility and place their children there, sometimes for geographic reasons, but often without regard to the range of quality of such facilities. In 2011, the New York Times reported hideous abuses at residential facilities throughout New York State. “Employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses,” the paper stated. “State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than five percent were referred to law enforcement. One obstacle complicates any effort to take action against employees accused of abusing those in their care: The victims often cannot talk or have extreme cognitive impairment. Local law enforcement officials point to this to explain a lack of prosecution of cases. But another factor seems to be at work. In many cases, the developmentally disabled do not have families actively involved in their lives, and, hence, no advocates.” These abuses cast a long shadow over the experience of families who are grappling with placement decisions. Though spending on housing and treatment for people with intellectual disabilities in the United States averages $380.81 per person per day, the actual amount fluctuates widely from state to state and even from county to county.

  Where families used to be counseled to separate themselves emotionally from the children they placed, many now remain deeply involved; placement out of the home is not placement out of the family. Most visit monthly at least and speak on the phone more frequently. Many parents want to be present to effect a progressive transition to avoid “transfer trauma.” “The time to have a young adult go into a group home is when you’re still around,” Elaine Gregoli advised. “I hear horror stories of parents who have forty- and fifty-year-olds at home. Then the parents die, and these forty-year-olds have to go into a new environment, where they’re asked to do things that they were never trained to do.” Many retired parents who still care for their DS children describe them as a comfort in a world where many older people are isolated and purposeless. Nevertheless, most people with DS will ultimately need some kind of outside care unless their parents outlive them, or siblings or friends take over; few are able to live fully independently. About three-quarters of people with DS who are still at home when their parents die are moved to residential placement.

  Some people with DS thrive at home and others thrive away from home, which reflects the personalities of the people with DS and the nature of their families. Living at home means a familiar environment, and, ideally, more love. Adults with DS who live with their parents may, however, suffer lack of contact with peers and considerable loneliness. As they grow older, such people have fewer things to do outside the house, and they tend not to learn skills for building friendships. One father in rural Pennsylvania, a construction worker, talked about how happy his daughter had been through high school; she had been a cheerleader and a member of the homecoming court, surrounded by friends. Once she graduated, however, her classmates moved away to college or got on with their busy lives, and he ended up taking her with him on his truck every day. She worked at Walmart a few hours a week and had no social life at all. She lived for two Arc dances a year. In one recent study, only about a quarter of adults with DS who lived at home could name a friend who was not part of their parents’ social network.

  Alongside the memoirs written by parents are, increasingly, those written by people with Down syndrome, who constitute a vital self-advocacy movement. More than eight hundred self-advocacy groups now exist in the United States alone, and members address themselves to legislators, caseworkers, and parents. Many of them are organized under the banner of People First, an international self-advocacy organization that began in Sweden in 1968. In 1973, the first North American meeting took place in Vancouver, where “mentally handicapped” people gathered at a conference called May We Have a Choice. People First operates in forty-three countries and has an estimated membership of some seventeen thousand. Their website explains, “We believe that if we can learn to talk at our meetings and among ourselves, we can learn to talk to anyone about things that are important to us. We talk to our parents, our service providers, our caseworkers, to city councils and mayors. We talk to legislators and legislative committees, to governors and even the President. Even though it may be hard to understand us sometimes, people listen to us because they know that we know what we are talking about.” For people with intellectual disabilities to have organized on this scale, even with helpers, is astonishing, especially when one considers the prognosis for the condition even a few decades ago.

  Until the late 1960s, no one with DS had ever achieved prominence of any kind, but since that time, actors, activists, writers, and artists with the condition have emerged. The first major publication by someone with DS was The World of Nigel Hunt: The Diary of a Mongoloid Youth, published in the UK in 1967. Hunt was the son of a school headmaster who, with his wife, attempted to educate Nigel like any other child and included him in the regular classes at his school. Nigel’s book recounts his day-to-day life, with touching references to his mother’s illness and death. Jason Kingsley and Mitchell Levitz’s Count Us In is an often joyful and occasionally humorous account of their lives, including knowing descriptions of the particular challenges they’ve faced. In 2000, Windy Smith, who has DS, addressed the Republican National Convention in Philadelphia, reading aloud a letter she had sent to George W. Bush; she went on to serve on the President’s Committee for People with Intellectual Disabilities within the Department of Health and Human Services. Many debated whether this represented exploitative manipulation by the Bush campaign, with one critic describing it as “the most grotesque piece of political theater I’ve ever seen.”

  The highest-profile person with Down syndrome for a long time was the actor Chris Burke, who starred in the TV program Life Goes On, but there have been many others, including Judith Scott, a fiber artist who died in 2005, and Luke Zimmerman, a young actor in the TV series The Secret Life of the American Teenager, who was also a football player at Beverly Hills High. In Germany, Rolf “Bobby” Brederlow, an actor, has a considerable following. Lauren Potter appears on the Fox hit Glee as a cheerleader with DS and has her own Facebook fan page. Arden Moulton described being with Chris Burke and having strangers ask for his autograph. “It was a mind-boggling experience,” she said. “He was a star first, and a person with a disability second.” The trickle-down effect is incontrovertible. A poised young woman said to me by way of introduction, “I have Down syndrome, like Chris Burke.”

  Research suggests that people with DS may have different learning mechanisms from typical children, and new studies are looking at whether the strengths of people with DS—who have, for example, unusually good short-term visual memory—can be harnessed to allow them
to learn more, better, and faster. Because they hold visual information more readily than auditory information, teaching them to read as early as possible is especially important and may play a larger role in their language development than it does for typical children. Many memoirists, including Michael Bérubé and Martha Beck, suggest that their children have forms of intelligence not to be found on IQ tests—islands of insight, ability, and even wisdom that come surprisingly readily to them.

  In his memoir about his son Ned, Greg Palmer says that Ned enjoys interacting with nondisabled people and engaging in conversation with them; the idea of isolating him among other mentally retarded people is anathema to his father. For many years, the Palmers avoided telling their son that he had DS, and when they finally broke the news, he said, “I find that a little hard to believe.” His inability to grasp his limitations was one of the indicators of his unpreparedness for life out in the world. Like many others with DS, he has a puzzling mix of strong abilities—he can play several musical instruments and writes good poetry—and sharp limitations—he is unable to take the bus across town without getting completely lost. Greg Palmer acknowledges that he has sometimes infantilized his son; he offers self-criticism on that front and is similarly critical of a larger world that continues to infantilize Ned. He complains of a view of Ned as adorable and funny by people with whom he would like to engage at a more complex level. Ned is the author of this poem, which reflects his verbal sophistication, his naïveté, and his longing:

  GIRLS

  Girls are neat. Girls are sweet.

  They’re the kind of people I love to meet.

  Teenage girls are what I love.

  They’re like angels from above.

  I’m crazy for girls, I’m crazy for love.

  Girls are like the wings on a dove.

  When I grow up and am feeling old,

  I’ll find all the girls I love to hold.

  I’d like to give all the girls a kiss.

  If there weren’t any girls, it’s girls I’d miss.

  People with DS have both romantic and sexual feelings. Many men with Down syndrome are sterile, but women with DS are as fertile as those without disabilities. Parents frequently worry that their children’s sexual activity will result in the birth of kids for whom they would be unable to care. The next frontier for people with DS, however, is marriage. On Life Goes On, Chris Burke’s character married a woman with DS and they lived in an apartment over his parents’ garage.

  • • •

  Tom and Karen Robards were hard-charging Wall Street types who met at Harvard Business School. Six years into their marriage, in the mid-1980s, they decided to start a family. Karen had an easy pregnancy, and they were totally unprepared for Down syndrome. Tom was crushed, but Karen said, “We’re going to love David just like any other baby. When people don’t know what to say, we’re going to tell them to congratulate us.”

  “I had massive crying jags,” Tom said. “Then someone we didn’t even know called us at the hospital to say, ‘You’re not alone.’ That was our first moment of hope.” The woman who called was Barbara Chandler, head of Manhattan Parents Support Group. “I remember asking, ‘Is there any joy at all in raising a child with Down syndrome?’” Karen said. “She said, ‘Yes. There is joy. There’s also heartbreak.’” That honest answer gave Karen the energy she needed. The Robardses went to see a pediatrician on the Upper West Side. “There’s nothing you can do,” he said. Tom and Karen were shocked. “Did that mean that there was nothing for us even to think about?” Tom asked. They found a doctor who specialized in genetic defects. She told them to provide every possible form of infant stimulation. The State of New York early-intervention program arranged for physical therapists to visit the family at home. Speech therapists worked on feeding and chewing to develop oral motor abilities. The Robardses joined a support group. “Some of our closest friends are from that original group,” Karen said. “We decided to write a pamphlet about the options after EI. We’re lawyers, we’re investment bankers; we know how to do research. We’ll just call up the public, private, and parochial schools and organize all the information. It wasn’t that simple. We faced the staggering bureaucracy of the public schools. I remember calling up a private school and I said, ‘I understand you take children with special needs.’ They said, ‘Oh, yes.’ I said, ‘Well, let me tell you about my child. He has Down syndrome.’ She said, ‘Oh, not that special.’ Then we tried the parochial sector. Again, ‘No.’ What were we going to do?”

  So Karen and the parents’ group raised $40,000 to start the Cooke Foundation, now called the Cooke Center, one of the largest organizations in New York City focused on educational inclusion for disabled children. From its inception, it was open to children of all socioeconomic backgrounds. It was nonsectarian, but began in affiliation with the Archdiocese of New York after Karen Robards persuaded the archdiocese’s director of special education to supply a space. That space turned out to be two large public lavatories; these were renovated into two classrooms by a member of the support group, a contractor who did the work at cost. “If anybody had told me that I was going to spend the next twenty years building the Cooke Center, I would have said they were crazy,” Karen said. “But we met other people and we bonded and then we had a mission. Once you have that fire in the belly, you can process the emotional devastation, which we’d been denying. As for what we built from there—you get sucked in.”

  They hired two special-education teachers—“one for each lavatory,” Karen said. The principle from the beginning was that their children should spend time with typically developing students, so they enrolled them in public schools for some subjects and taught others at Cooke. David continued to attend both Cooke and the public schools, becoming the first disabled child in New York City to be included in a regular classroom. “You have to have a place in both worlds,” Karen said. “Jason Kingsley and his parents had thrown open a lot of doors. We were able to walk through those doors. When they’re younger, our kids can be more fully included in classrooms because everybody’s just learning colors and social skills. As you go on, the gap grows wider, and our kids really need to be focusing on life skills. How do you join a gym? How do you take money out of the ATM? Things that come naturally for other kids require effort from our kids. So we work on building those skills so that they can be included not only in education but also in life.”

  When David was seven, the Robardses’ second child, Christopher, was born bright and bouncing. At thirteen months, he began having seizures and eventually developed status epilepticus, an often-fatal condition in which the seizures are going on almost constantly and cannot be stopped. “I kept thinking, ‘Oh, well, if it’s only seizures, we’ve done Down syndrome and we can deal with that,’” Karen said. “But it wasn’t just seizures.” Christopher has shown cognitive delays, mental retardation, speech delay, and motor issues. “I didn’t cry about David,” Karen said. “But I cried without stopping about Christopher. How could this be happening twice in one family?” Later in life, Christopher would be diagnosed with partial agenesis of the corpus callosum, which is the nerve connection between the left and right halves of the brain; a typical corpus callosum is about ten thousand times larger than Christopher’s. The syndrome may have been caused by a virus Karen contracted during the first trimester of pregnancy.

  “The thing about Down syndrome,” Karen said, “is that there were so many kids who had gone before, there was at least a path.” Christopher has some strong abilities and some noticeable deficits. When I met the Robardses, Christopher had just taught himself solitaire on the computer, which David couldn’t possibly do. But David is extremely emotionally available; Christopher has never shown much interest in other people and could make it through Christmas without noticing that it was a special day. “For five years or so, he was seizing weekly,” Karen said. “We couldn’t leave the house without worrying what was going to happen. So it put a very different strain on us than havin
g a child with Down syndrome.”

  Karen was pregnant again when Christopher’s issues began to surface, and when he was eighteen months old, Kate was born, free of disabilities. When Kate was young, she found Christopher hard to relate to and became close to David despite their nine-year age gap. “When David noticed that she was surpassing him, he got very competitive with her and was not necessarily the nicest,” Karen said. While the Robardses wrestled with these dynamics at home, the Cooke Center they continued to oversee grew and prospered; it had 186 employees when I visited, twenty years after it was set up. “You can’t learn how to be in human society if you’re separated from it,” Tom said of inclusion. “You learn at least as much from your peers as you do from your teachers.” Karen said, “Special education is a set of services that can be delivered in any number of places. But it has to be delivered. You can’t just dump a kid in a regular classroom and not train the teacher or put in additional support. Our tagline at Cooke is ‘When everyone is included, we all learn more.’ The typical kids learn empathy; they learn to appreciate diversity.” Cooke now helps charter schools with programs for children with special needs, educates in the public sector, and trains paraprofessionals for inclusion. Cooke works with corporations, too, to provide jobs for disabled kids.