I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this. . . .
When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy . . . and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very, very significant loss.
But . . . if you spend the rest of your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.
Seven to eight million Americans have intellectual disabilities; one out of ten American families is directly affected by mental retardation. Down syndrome, the result of a triplication of the twenty-first chromosome, is the most common form of intellectual disability, occurring in about one of every eight hundred births in the United States, for a total American population of more than four hundred thousand people. Far more such pregnancies are created; more than 40 percent of fetuses with DS miscarry or are stillborn. In addition to mental retardation, Down syndrome may entail heart defects (occurring in about 40 percent of cases), loose joints, thyroid disorders, a malformed digestive tract, leukemia, early-onset Alzheimer’s symptoms (in at least a quarter of cases, a far higher proportion for those who live past sixty), celiac disease, shortness, obesity, hearing and vision problems, infertility, immune deficiencies, epilepsy, a small mouth, and a protruding tongue. Poor muscle tone affects the development of mobility, coordination, and, because of low tone in the mouth, speech. None of these features, except for slowed mental development, occurs in all cases of DS. People with DS also show unusually low rates of most cancers and are not subject to hardening of the arteries. People with DS have smaller brains, with reductions in most areas and fewer neurons in the cortex. They also have reduced synaptic density, and delay of myelination, the developmental process through which nerves are sheathed. They are at increased risk for depression, psychosis, disruptive-behavior disorders, anxiety, and autism. Down syndrome appears to have existed in all human populations across the span of human history; it has been found in chimpanzees and gorillas, as well.
The original and most reliable form of prenatal testing for DS is amniocentesis. The physician uses a needle to withdraw an ounce or so of amniotic fluid, in which some fetal cells are adrift; these cells are then analyzed for various conditions. Some people wish to avoid amnio because it carries a risk of miscarriage and because it seems intrusive for the fetus. CVS can be performed earlier than amnio but carries a greater risk of miscarriage. The “triple screen,” done in the second trimester, tests the mother’s blood for proteins and hormones associated with DS. Introduced in 1988, it identifies about two-thirds to three-quarters of cases. A quadruple screening, which looks for another hormone, brings this success rate up to four-fifths.
Ultrasound has been used to look for birth defects since the 1970s, and as imaging technologies and our ability to interpret the scans become more sophisticated, this is an increasingly reliable way to diagnose DS. Early in pregnancy, about the same time as CVS, an ultrasound test, nuchal translucency, measures the fluid behind the fetus’s neck, which is increased in DS and other anomalies. Later in pregnancy, 3-D ultrasound can provide more precise information. New noninvasive blood tests may replace these techniques if they prove similarly accurate; one detects placental messenger RNA in the mother’s bloodstream, and another measures bloodstream fragments of chromosome 21. No technique can establish the severity of prospective impairments, mental or physical.
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At the time Emily Perl Kingsley and her husband, Charles, were expecting, they decided to forgo amniocentesis because the risk of injuring the fetus seemed too great. “And if I had had amnio,” Emily said, “I would have terminated, and I would have missed out on what has been not only the most difficult but also the most enriching experience of my life.” Jason Kingsley was born in 1974, in Westchester County, north of New York City. The doctor told Charles that such a child belonged in an institution and discouraged the Kingsleys from seeing the baby. He said that “this mongoloid” would never learn to speak, think, walk, or talk. Emily was kept tranquilized and given pills to stop lactation, on the assumption that she would not take the baby home. “They said he’d never be able to distinguish us from other adults,” Emily recalled. “He would never be creative; he would never have an imagination. I was collecting a first edition of Lewis Carroll and putting aside all this Gilbert and Sullivan stuff that I love; I had boxes of things that I was going to do with this kid, all of it sophisticated and terrific. I turn on the television. All of a sudden, there’s nobody who looks like me. Everybody is so perfect! I had vanished. I cried for five days nonstop.”
This was soon after the exposé of horrific conditions at Willowbrook, and Emily and Charles couldn’t bear the idea of institutionalization. But it was also a moment in the 1970s when nurture arguments held ascendancy; people sought to bring about their children’s remission from various grave conditions through insight and lavish kindness. A social worker at the hospital where Jason was born mentioned that a new, experimental program called early intervention might help kids with DS to learn some basic skills. “We had to give it a try,” Emily said. “If it turned out to be heartbreaking and miserable, we could institutionalize him based on our own experience, not on hearsay.” So Emily and Charles brought Jason home, and when he was ten days old, they went to the Mental Retardation Institute. “I stood in the parking lot, with my ten-day-old baby in my arms, and I couldn’t make my feet walk through a door that had that name on it,” Emily recalled. “I was paralyzed. Charles pulled up in his car, saw me there, grabbed me by the elbow, and dragged me into the building.”
The doctor at the institute said almost the opposite of what they had been told in the birthing room: that they had to start with stimulation of every kind, especially engagement of Jason’s senses, because no one knew what might be possible for a child who received enough positive input. Charles and Emily ripped apart the elegant, pastel baby’s room they had created, painting it blinding red with stenciled green and purple flowers. Emily persuaded the local supermarket to give her the giant lacy snowflakes they had used as Christmas decorations, and those went up, too. They hung things from the ceiling on springs, so they were always moving and bobbing. “You could get nauseated just walking in there,” Emily said. They put in a radio and a record player so there was mu
sic all the time. They talked to Jason day and night. They moved his limbs through stretches and exercises to improve his muscle tone. For six months, Emily would cry herself to sleep. “I almost drowned him in the tears I shed over him,” she recalled. “I had this fantasy, that I would develop a very fine tweezers and go in and pick out every extra chromosome of every cell in his body.”
One day when he was four months old, Emily was saying, “See the flower?” for the eight hundredth time, and Jason reached out and pointed to the flower. “He could have been stretching,” she said. “But I experienced it as him saying, ‘O-kay, Mom, I got it.’ It was a message to me: ‘I am not a lump of mashed potatoes. I am a person.’” Emily called Charles immediately. “He’s in there!” she cheered. The phase that followed was almost ecstatic. Emily and Charles tried to come up with novel experiences for Jason almost daily. Emily sewed a quilt that had a different fabric every few inches—terry cloth, velvet, AstroTurf—so that every time Jason moved he would experience a new sensation. When he was six months old, they took a giant roasting pan and filled it with Jell-O, forty packages’ worth, and lowered him into it so he could writhe around and experience the strange texture, and eat some of it, too. They used brushes on the soles of his feet to make his toes curl up. He learned better than Emily and Charles could have hoped. Though his speech had the blurred cadences typical of people with intellectual disability, he was able to communicate with it. Emily taught him the alphabet. He picked up numbers; he learned words in Spanish from watching Sesame Street, where Emily had been a writer since 1970.
Jason started reading at four, ahead of many typical peers, and one day put together alphabet blocks to spell a headline: “Son of Sam.” At six, he had a fourth-grade reading level and could do basic math. The Kingsleys started counseling families who had just had babies with Down’s. “It became a passionate crusade, that other people shouldn’t be told that their kid had no potential. We would meet them in the first twenty-four hours and say, ‘You’re going to have to work harder. But don’t let anybody tell you that it’s impossible.’” By the time Jason was seven, he could count to ten in twelve languages. He had learned Sign as well as English and soon could tell Bach from Mozart from Stravinsky. Emily took Jason on the road; they addressed obstetricians, nurses, and psychologists, as well as parents of children with Down syndrome. The year Jason was seven, they gave 104 lectures. Emily felt that she had licked DS; she lived in triumph.
Emily arranged for Jason to appear as a regular guest on Sesame Street, and he normalized tolerance for a new generation, playing with other children in a way that acknowledged but did not stigmatize his condition. She wrote a screenplay based on their experience and insisted that the producers cast children with Down syndrome, even though actors with DS had never before been on TV. Jason provided the voice for the character modeled on him. Jane Pauley did a special about Jason and a friend who also had Down syndrome and had received early intervention. The two boys eventually wrote a book, Count Us In, in which Jason described the obstetrician who told his parents that he would never learn to recognize them or talk. “Give a baby with a disability a chance to grow a full life, to experience a half-full glass instead of a half-empty glass,” he wrote. “Think of your abilities, not your disability.” Jason became the first DS celebrity; his renown marked the emergence of Down syndrome as a horizontal identity. Thirty years later, Emily received a special award from the US Department of Health and Human Services for her work showing people with disabilities in mainstream media.
Emily had been told her child was subhuman. When this proved untrue, it was logical to question every traditional assumption about DS, and Jason broke records and stymied expectations. Yet while he could learn more than anyone else with Down syndrome had ever learned, he had limitations. Nuance eluded him. He could read better than he could understand what he was reading. “I knew I couldn’t remove the chromosomes,” Emily said. “But I really thought that maybe nobody knew what these kids were capable of. No one had been able to do what he did. Then around the time he turned eight, the rest of the world caught up and went past, and I began to realize all the things he couldn’t do and would never be able to do. All the trained-seal stuff was fantastic, but in the real world, the intelligence to count in many languages is not as important as social intelligence, and he didn’t have it. I had not made the Down syndrome go away.”
Jason would hug strangers and didn’t understand that they weren’t friends. He wanted to attend sleepaway camp, but after he’d been there a week, Emily got a call saying that the other kids didn’t like him and didn’t like how he kept hugging everyone. Some parents had said that if Jason didn’t leave, they were going to pull their own kids. When he played soccer, he would forget or not understand which team he was on. The typical kids who had been his friends began to snigger. He continued to play with toys for small children, and he watched cartoons beamed at kids half his age. It seemed that the miracle was unraveling; he could be a TV star and a successful author, but he could not function in mundane settings. “It was an unbelievably horrible readjustment for me,” Emily said. Jason, too, was in anguish. One night when Emily was tucking him into bed, he said, “I hate this face. Can you find a store where we can get me a new face, a normal face?” Another night he said, “I’m so sick and tired of this Down syndrome business. When is it going to go away?” Emily could only kiss him on the head and tell him to go to sleep.
Emily began to rework her lectures. She still wanted to encourage people not to institutionalize their children. She wanted to say that she loved her son and that he loved her. But she didn’t want to sugarcoat her message. It was at this time that she wrote “Welcome to Holland.” Bringing Jason up wasn’t the hell she had been told about when he was born, but it was also not Italy. Jason had become famous for breaking the mold, and it was hard to figure out whether to keep dragging him to greater heights or to let him stay where he was comfortable being—whether he’d have a happier life with more achievement or whether that achievement was only a vanity project.
As Jason reached adolescence, his classmates began having parties, but he wasn’t invited and spent Saturday nights at home, watching TV and moping. Emily called other parents of teenagers with Down syndrome, asking, “Is your kid as lonely on Saturday night as mine is?” So when Jason was fourteen, the Kingsleys began to host a monthly party at their home, with food, soda, and dancing. “They felt so normal,” Emily said. “They loved it.” The parents would sit upstairs and talk about their shared experiences, so it was really two parties. When I met Emily, the monthly parties had been going for fifteen years. She had bought a karaoke machine and the kids—many no longer really kids—were having a rollicking good time. “I always say to people, ‘Invest in inclusion, but keep one foot firmly planted in the Down syndrome community,’” Emily said. “‘This is where your kid’s ultimate friendships are going to come from.’”
Jason had been in a special-needs classroom, but nonetheless passed the exams requisite for a high school diploma. Emily located a post-high-school program in Amenia, New York, where young people with learning disabilities, most without other challenges, were taught money management, time management, cooking, and housekeeping in addition to clerical and other job-related skills. Jason’s credentials and test scores were way ahead of those of most of the other applicants. “The parents freaked out when they saw that Jason was applying to this school,” Emily said. “They thought it was going to turn into a ‘retard school.’ So I went to the school president. ‘What’s the criterion for entering this school? Is it the shape of your eyes? Is it how cute you are? If so, let’s go down the hall, and I’ll show you a few kids you ought to expel.’” Only after Emily threatened a lawsuit was Jason finally admitted; he was later judged by the administration to be a “model student.”
Nonetheless, many things remain elusive. Jason wanted to drive. “It’s fun for boys and sexy for girls,” he said in Count Us In. “You can get girls if
you drive.” He had announced that when he was old enough, he wanted a red Saab turbo convertible. Emily paused as she recounted this, deeply frustrated. “So how do you tell your kid that he’s never going to drive? I said, ‘Your reaction time is slower than other people’s.’ I made it something physical. He’s no dope. He shouldn’t drive because he doesn’t have the judgment, but how to say so?” Jason lives in a lonely demographic. He is too bright for most others with Down syndrome; they can’t keep up with his verbal abilities, his puns, his games. But he is not bright enough for people without disabilities. “He has no peers,” Emily said with a mix of enormous pride and terrible regret.
Jason described a life for himself that included a family and a dog and a white picket fence; he has a sort-of girlfriend, who also has DS. Emily took him in for a vasectomy. Though many males with DS are infertile, some are not. “It only takes one sperm to do it,” Emily said. “We did not want to leave the responsibility of birth control to a girl whose capacity we were unclear of. If he wants to set up housekeeping with somebody and have a marriage, I’ll give him the wedding of the age. Being a good parent, though—I simply don’t see how he could do it.”
Charles’s dream was that his son would live independently, so he set Jason up in an apartment of his own. Jason found his first job at Barnes & Noble, tearing the covers off magazines destined for recycling. He found it excruciatingly boring and kept making up ways to amuse himself. When his supervisor insisted that this was not his job, he replied, “I’m an independent adult person and I make my own decisions”—showing the very spirit that Charles and Emily had fostered, applied in exactly the wrong context. He was fired soon thereafter. His next job was at the White Plains Public Library. He developed his own idiosyncratic way of shelving videos, and unsurprisingly, the library staff wanted things done their way. Jason argued about it until they, too, had to let him go.
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