I was accustomed to my daughter being inconspicuous. For the first six years of her life, Christina, who has Down syndrome, had lived in a town where faces like hers were commonplace. We lived on Long Island, New York, in a village with a collection of group homes for the disabled. It was common to see adults with Down syndrome going to work, to the store, attending church, and socializing. No one did a double take upon seeing the typical almond eyes and rounded face of a little girl with an extra chromosome. We realized that were fortunate, this is a highly unusual circumstance in a society where people with Down syndrome are disappearing, a result of the 92 per cent abortion rate recorded for children diagnosed before birth. We were pleased she spent her preschool years as part of that town.
When Christina turned five, we were surprised to hear that she did not qualify to enter our local public kindergarten. Though our town was full of adults being integrated into society, our schools did not yet consider that a priority, and her delays in speech and toileting made her unwelcome in the public schools. We visited the special education school, a former Army barrack. The school had second-rate classrooms and a concrete playground without a blade of grass. Although the staff was dedicated and professional I was so dismayed by the prison-like compound with the windowless cafeteria, I resolved to look elsewhere. So we left the place where I grew up, for the countryside of Connecticut, where, thanks to inclusive education, children of every ability level are integrated into the typical classroom.
I knew that life would be different in our new home when I overheard this comment from the children's section of the town library. "Mommy, we just saw this little Chinese girl, she was speaking a different language and everything." The mother flushed deeply and corrected her sons, "No, she has Down syndrome, that's why she looks like that." I reassured her that I took no offense, the boys were merely being observant. They were not the first to be mystified by the exquisite almond eyes of children like Christina.
Langdon Down, the British psychiatrist for whom they are named, first called people with Down syndrome "Mongoloid" assuming that somehow they had descended from the Mongolian race ( Dr Down was an in-law of Charles Darwin). The negative stereotype which accompanies the name "Mongoloid" persisted until 1958, when French geneticist Jerome Lejeuene discovered that Down syndrome was caused by an extra copy of the 21st chromosome. It is more accurately called Trisomy 21. Stereotypes till persist and, until recently, babies born with Down syndrome were routinely put away into institutions "for their own good". Mothers felt pressured by pediatricians who offered no other options. Their precious son or daughter would be confined to an institution where they would never learn to read, or hold a job or be part of a family.
Things have changed dramatically for people with Trisomy 21 in recent years. Until the 1980's heart operations were rarely performed on babies. Their lives did not seem to hold enough promise to merit the effort, until parents began to advocate for their children. Now the 50 per cent of babies with Down syndrome born with heart defects have routine operations, doubling their life expectancy from 25 to 50. The mapping of the human genome prompted expanded research into the condition. Scientists at the Down Syndrome Research and Treatment Foundation assert that a drug improving their learning and memory could be available in ten years. In the seventies, no one dreamed that people with Down syndrome would graduate high school with their typical peers, work at the local supermarket, or even live in the community. Who knows what they will be doing by the time Christina is 27?
Having Down syndrome makes Christina a bit more of a curiosity here in Connecticut than it did back home. However, she has learned to turn that distinction to her advantage. From the hug she gives her morning bus driver, through the chorus of "goodbyes" she receives on the afternoon bus, Christina basks in unusual popularity in her school. It seems that once young children satisfy their curiosity about why she looks and acts a certain way, they are content not only to be her classmates, but also to be her helpers and friends. "Christina was sad today, so we made her laugh," recounted Henry, the eight-year-old in the seat across from her on the bus. No one asked him to be her big brother, yet he prides himself on his role. While her delays slow her learning and necessitate extra support in school, Christina has unique gifts to offer those who interact with her. Her teacher aide said this in a Christmas card last year: "Working with Christina has been a blessing from God for me." I asked her if she still felt that way in June, after my curious daughter pulled the fire alarm. She smiled knowingly and said, "That's our Christina!"
One thing you must never try with Christina is to tell her she cannot do something. She will move heaven and earth to prove you wrong. I issue the same warning to those who would stereotype people with Trisomy 21; they delight in proving you wrong. Ask movie star Chris Burke, music teacher and husband Sujeet Desai, or Lake Tahoe swimmer Karen Gaffney -- all Down syndrome achievers. Christina will have many challenges ahead of her as she learns to read, and speak clearly, but becoming a vital part of her community is a goal she has already mastered.