Of the 5,500 children born with DS in the United States each year, about 625 are born to women who had prenatal diagnosis and chose not to terminate. One doctor assured Tierney Temple Fairchild, who had a prenatal diagnosis, “Almost everything you want to happen will happen. It’s just going to happen at a different schedule.” This is untrue. A great deal does not happen on any schedule for people with DS. The remark was nonetheless helpful to the family in deciding to keep their child, and they didn’t have amnio in subsequent pregnancies. “I had a choice and I chose life,” Fairchild wrote. “Does that make me pro-choice or pro-life? Our political parties tell us we can’t have it both ways. I chose life, but I am thankful I had the choice.”
Like deafness and dwarfism, Down syndrome may be an identity or a catastrophe or both; it may be something to cherish or something to eradicate; it may be rich and rewarding both for those whom it affects directly and for those who care for them; it may be a barren and exhausting enterprise; it may be a blend of all these. “I’ve never seen a family who chose to have the baby and then were really sorry,” Elaine Gregoli said. There is a strong movement to connect expectant mothers with a prenatal Down’s diagnosis with families bringing up children with DS. Many parents have written memoirs expressing the rewards of raising such children, contending that there is less to complain of in Down syndrome than in the attitudes of the world. Of course, people who dislike having children with DS don’t tend to write memoirs; neither do those of low socioeconomic status, for whom the obstacles to good treatment may be daunting.
My own observation is that some parents manufacture an affirmative construction of their child’s disability to disguise their despair, while others have a deep and genuine experience of joy in caring for disabled children, and that sometimes the first stance can generate the second. I met disability activists who insisted that everyone’s joy was authentic, and I met psychologists who thought no one’s experience was. The truth is that while some people fall at either end of this spectrum, most are scattered across its wide span.
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Deirdre Featherstone didn’t want children, so she was delighted to learn that she was infertile. When she became pregnant in 1998, however, she felt she was stuck, and she decided to let things unfold. She was thirty-eight but not inclined to seek amniocentesis. “I believe certain things are not your business,” she said. “If that baby is supposed to be inside alone for nine months, then you need to leave it alone. You don’t go sticking things into their environment.” Her husband, Wilson Madden, wanted to do amnio. “I wanted to give him that because he likes to plan,” she said. “But the night before, I said, ‘What if we found out something?’ He said, ‘I don’t think that would make any difference.’ I said, ‘Well, if I find out there’s something wrong, this kid’s out of here, because, as you well know, I don’t want to be anyone’s mother. I don’t even have the courage to be the parent of a regular kid. I’m perfectly ready to have an abortion if there’s anything wrong. You aren’t. So you’d better stop pushing the amnio.’”
They didn’t have the test. “Thank God, because it would have been the biggest mistake of my life,” Deirdre said. “You can’t assess what you don’t know.” The day before her daughter, Catherine, was born, Deirdre, who is a jeweler and stylist, was supposed to be accessorizing a fashion show. She worked that afternoon, reviewing the outfits, then went home and had Thai food. When she began to heave in the night, Wilson realized she was in labor; she insisted it was just the takeout. A midwife delivered Catherine at home at ten the next morning and told her to see a pediatrician straightaway. The pediatrician confirmed visually that Catherine had Down syndrome. “I already knew that Catherine was the nicest person I was ever going to meet,” Deirdre said. “It was harder for Wilson. It’s probably always harder for the father, because they haven’t had a physical relationship with the child for nine months.” The pediatrician sent them for genetic screening the next day to confirm the diagnosis. “I had tears coming down my face, and she reaches up,” Deirdre said. “She has one tear coming out of her eye, and she wipes my face. Twenty-three hours old.”
Catherine was born into a very different world from the pre-EI one Lynn Gregoli and Carson Goodwin had entered, and Wilson felt that they had to look into every available mode of treatment. Deirdre said, “One of the things that made the early period difficult was that she would have therapy three times a week for speech, then occupational therapy, then physical therapy, and also craniosacral therapy. Her schedule was so full, it was hard for me to leave the house. That was probably the only difficulty, besides adjusting to the fact that somebody else is depending on you to live. I said to Wilson, ‘If this is more than you can handle, you’re free to go. I won’t hold it against you and I won’t think you’re a bad person. But you can’t stay upset forever.’” Wilson explained, “It never occurred to me to leave. But I was slower to get into the whole thing than Deirdre.”
Deirdre surprised even herself. “I was so sure I was the parent who was not going to be able to deal with a child who was in any way different,” she said. “I was just relieved to love her. She was very lovable. All my friends had these children they thought were perfect, and then they’ve had to come to terms with their children’s limitations and problems. I had this baby everyone thought was a disaster, and my journey has been to find all the things that are amazing about her. I started off knowing she was flawed, and all the surprises since then have been good ones. She’s one of the nicest, kindest, most thoughtful, sensitive people that I’ve ever met. She’s funny. She always highlights the positive; I don’t know how much of that is personality or if that’s Down syndrome. When she makes up her mind that she’s not doing something, that is that, which is also typical of Down syndrome.”
The mother of a child with special needs inevitably becomes a soothsayer. “Somebody I know called me up in tears, saying, ‘I just found out my kid has DS; what should I do?’ I said, ‘What do you want to do?’ She said, ‘It’s my baby, and I want to have it.’ I said, ‘I’ll tell you what, it’s the best thing that has ever happened to me. And had I had the information, I would have made this big, big mistake by not having her. You’ve met my kid, we have a really good time.’” Recounting this to me, Deirdre added, “Down syndrome is easy, or at least Catherine is easy. Autism is probably a different experience. Would I make her life easier? Any way I could. Would I blink and turn her normal? No, I wouldn’t. She may, at some point, have a different opinion and want to get facial surgery or some other normalizing procedure, whatever’s out there by the time she grows up. Would I endorse her doing so if that’s what she chose? If it comes up, I will, but I hope that I’ll have raised her with enough personal strength and self-esteem to be happy in who she is.”
Deirdre never had to make her way through the gauntlet of prejudice that so determined Emily Perl Kingsley’s early experiences. “People still give up their child. People still have abortions when they find out,” Deirdre said. “I’m not here to judge it. You hate lima beans, I love lima beans. There’s a lot of political correctness that I find ridiculous. But I’ll take whatever’s made it unacceptable to make fun of a child because she’s different. I think we are less tolerant of prejudice than anywhere else or any other time.” She described being at Catherine’s public school in Tribeca one day when a five-year-old girl said, “I heard that when Catherine was inside you, you broke your egg, and that’s why she came out funny.” Deirdre said, “If you break your egg, then you don’t have a baby at all.” The little girl said, “You mean she’s not broken?” Deirdre said, “No, she’s not broken. She’s a little different.” Deirdre looked around the play area and said, “See that little girl over there? She has red, curly hair, and you have blonde hair. This little boy, he’s black and his mom and dad are white, and they’re Italian, and his sister is his sister, but they’re not really related biologically.” One of the parents nearby said, “I’m Korean and my husband’s white.” Anothe
r said, “I didn’t marry a man, but my partner is a lady, so my child is also different.” In this world of infinite variety, Catherine was just another variation on the idea that the only normality is nonnormality. “Sometimes I see somebody with a child with Down’s, and I’ll say, ‘My daughter’s in the same situation, she’s eight,’” Deirdre said. “Nine times out of ten, people will say, ‘Congratulations. Welcome to the club.’ I think a lot of us feel lucky.”
As a mother, Deirdre is astonishingly patient. I witnessed her negotiating Catherine down from resistance on more than one occasion, capably steering her way around direct confrontations. Catherine tends to want to wear inappropriate clothes; she sometimes insists on a sundress when it’s cold out. “I say, ‘Why don’t you wear pants under your dress, or over your dress.’ Sometimes, she looks like she has furnished herself from a homeless shelter. She’s good with that. So what am I going to say? I’m supposed to be building self-esteem, not knocking it down.” It has been harder to maintain a sense of humor about the inevitable battles with the system, however. Wilson said, “It’s important that she not be the slowest kid in the room. Maybe a hundred percent inclusion all the way is not the best. We’re looking at a camp that caters to special-needs kids.” Deirdre has a tigress’s instinct when it comes to her daughter’s education. “Her first kindergarten was not a fit at all. I requested a transfer on day two. Her education is just so important, it’s more important than breathing. I had been to the board of ed, back and forth, and finally one day I hired a babysitter for Catherine for a week, and I packed a bag with my computer, a power pack, electrical cords, my cell phone, chargers, several days’ worth of clothes, books. I went to the board of ed and said, ‘I need to meet with the special-needs coordinator for this board of ed.’ ‘I’m sorry, she’s not in. Can you come back?’ ‘No. I’m just going to stay. It’s no trouble whatsoever. I have enough things for seven days, and I will sit here until she has time, but I don’t want to rush her in any way.’ I sat there, taking different things out of my suitcase, and making sure that everyone knows, oh, underwear, underneath that’s the charger, and I’ll get it out now, then put the underwear back in. After four and a half hours, somebody came out and said, ‘Can we help you?’” Catherine was in a new school by the end of February. “I’m never unpleasant,” Deirdre said. “But I make it clear that I do need certain needs met.”
Five years later, I asked Deirdre how Catherine’s education was going. “I was asking her about vocabulary words for school, and she said her new words were opportunity and deficient. I asked her for the definition of deficient, and she thought about that and finally answered, ‘You, Mom.’” Deirdre burst out laughing. “I don’t have a fear that everyone’s going to find out I don’t know what I’m doing as a mother because I’ve already admitted that. The question is how you educate yourself. Sometimes I think I’m a great mother. Sometimes I think I suck. I’ve never once in a million years said that I know what I’m doing being somebody’s mother. I barely know what I’m doing being somebody’s wife.”
• • •
People born with DS develop slowly and stop short of typical intellectual maturity, but their development usually runs on a steady course. Anyone who can relate to a typical child through various developmental stages can relate to a person with DS. DS babies are slow to make eye contact, slow to sustain it, and slow with imitative behaviors. They do not start to speak until they are two or three years old, and they do not make two- and three-word phrases until they are three or four years old. DS children often fail to grasp fundamental principles of grammar. I once asked someone who worked with people with DS why some are so much smarter than others, and she said, “Why are some people without DS so much smarter than others?” Though the parallel holds, some people do have “worse” DS than others. David Patterson, a geneticist working on trisomy 21, recently wrote, “It is virtually certain that genes on chromosome 21 do not work alone to cause the features we recognize as Down syndrome. They must work in concert with genes on other chromosomes. This is likely to be one of the reasons for the wide diversity seen in persons with Down syndrome.”
People with Down syndrome are often warm and sociable, eager to please, and free of cynicism. Larger studies indicate that many people with Down syndrome are also stubborn, defiant, aggressive, and sometimes disturbed. In addition to the physical challenges that some people with DS face, many have behavioral issues, including ADHD and oppositional disorders; those with milder cases tend toward depression and pronounced anxiety. The popular image is not so much groundless as incomplete. The experience of living with DS is not easy. According to a large, recent study, these children generally have “less idealized views of themselves” and experience “repeated exposures to failure which contributes to uncertainty and ‘learned helplessness,’ which in turn has been linked to depression and other problems.”
People with DS are relatively low-energy and consistent in their behavior, which means that they are less demanding of caregivers than people with high-energy, chaotic disorders, such as bipolar disorder and autism. Both children and adults with DS are at heightened risk for physical and sexual abuse. Those with behavioral problems are more often placed out of the home by their families; they are less likely to fit in well in those settings, either, however, because they wear out paid support staff and are harder to take out in public. All of this, of course, exacerbates the symptoms that underlie their behavior.
Many treatments exist for the symptoms of DS, but none alleviates the condition itself. The extra chromosome cannot be suppressed or removed, though there is preliminary work on gene therapy to achieve this. Vitamin regimens have been in use to treat people with DS since the 1940s, as have off-label antihistamines and diuretics, though none of these has been shown to have any benefit; some, indeed, have been shown to have minor adverse effects. In addition, plastic-surgery protocols can normalize the appearance of people with DS. Such procedures include a sometimes pragmatic shortening of the tongue—which is said to reduce drooling, improve speech, and help people with DS to breathe better—and a wide range of cosmetic interventions such as nose jobs, removal of excess fat from the neck, and reshaping of the eyes to eliminate their slant. The National Down Syndrome Society and other groups object to these measures as unnecessarily painful and even cruel, the DS version of limb-lengthening, and also take umbrage at the prejudice against people who look as if they have Down’s. They would like to use public education to change responses to a DS face rather than change its appearance.
• • •
Michelle Smith, a financial adviser at Wachovia Bank, is a perfectionist, and it is not easy for perfectionists to have children with disabilities. She has displaced her perfectionism onto mothering; if there is a perfect way to handle having a child with a disability, Michelle Smith has found it. She has even done a perfect job of renouncing perfection.
About fifteen weeks into her pregnancy, Michelle went for an alpha-fetal protein blood test. Her obstetrician said her results placed her at elevated risk for DS and offered her amnio. “I didn’t even tell my husband that was an option,” she recalled. “I went into complete and total denial. The person I had always been would have been the supercompetitive New York mom: the right clothes; the right barber; the right job. I would see disabled people and be so freaked out that I would just not look. But weird things happened during my pregnancy. I turned the TV on and just randomly saw a Touched by an Angel episode with the guy with DS. I was in Home Depot, eight months pregnant, and this Down syndrome little girl walked right up to me, with no mother or father with her, and put her hand on my stomach. I thought, obviously, somebody’s trusting me with this pregnancy.”
At the delivery of Michelle’s son, Dylan, the midwife thought his neck was a little thick. She looked up Michelle’s blood test. An hour later, she told Michelle that her son had Down syndrome. “They put him on my stomach, and he gave me a spooky look, where I actually felt like he was the sage and
I was the child,” Michelle said. “I was intimidated by him, in this really beautiful way.”
Michelle was determined not to look at things darkly, but at first it was hard; the baby stirred up all her own fears and insecurities. When she brought Dylan home from the hospital, she entered her apartment building through the back door because she was afraid of what the doorman might say. When she got in an elevator with Dylan, she would blurt out his diagnosis. “I felt everyone was staring,” she said. “But it was just all about my judgments.”
As Michelle recounted it, her husband, Jeff, couldn’t handle having a DS baby. “You have a conversation before you get married about children,” she said. “Sometimes about money; sometimes, about religion. You rarely discuss what you’d do with a pregnancy with a special-needs kid.” Jeff said that none of this would have happened if Michelle had just had the amnio. “Yes, it would have,” Michelle said. “He would still be here.” Jeff went through eight months of depression, and by the time he began to emerge, she had decided she wanted a divorce.
Immediately after the birth, Michelle began doing research on treatment for infants with DS. She read “Welcome to Holland,” which helped her. “I read eleven books in the first two weeks,” she said. “Then I met some other moms, who have been my saving grace. We have a group of four and we call ourselves ‘the Down’s moms,’ and they’re all women that I would be friends with anyway.” They taught her how to navigate EI and everything that followed.
Michelle found an EI program located in the World Trade Center. Three months after Dylan was born, 9/11 happened. That was the end of the center. As she tried to figure out what to do next, Michelle felt the fighter in her coming to the surface. “The service coordinator for your agency is walking that fine line between giving you what you deserve, legally, and saving the state money. One of the other mothers said, when I had a bad meeting, ‘Oh, you poor little neophyte. Here, pick yourself up.’ So I hired a special-ed attorney to go to the second meeting with me. I don’t know what you do if you’re poor or uneducated with a Down syndrome kid, and you don’t even know what you don’t know.”
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