Down Syndrome

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The Gifts of Children with Down Syndrome - July 11, 2007 What is your reaction when you see a child with Down syndrome? Avert your eyes? Try not to stare? On the other hand, what is your reaction when you see any child? Do you enjoy their beauty and winsomeness (at least if the child is behaving well)? A new book should help you view children with Down syndrome as children who just happen to have an extra chromosome, but who have challenges and joys like any other child. They are not only gifts of God but they offer us gifts as well. Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives is a book of 63 personal stories of mothers of children with Down syndrome released from Woodbine House (which has a whole catalog of wonderful resources for families dealing with special needs children). It was edited by Kathryn Lyndard Sooper, the mother of seven children, and editor of Segullah, a literary journal. Her son, Thomas, born with Down syndrome, is only about 18 months old. I'm sure you've heard of Down syndrome and probably know one or more families (or have in your own family) children or adults with this situation. Named after John Langdon Down, the first physician who identified it, the syndrome occurs when there is an error in the egg cell division and an additional third chromosome (Trisomy 21) becomes part of the baby's genetic material. This extra chromosome alters the development of the body and brain, resulting in some degree of mental retardation from mild to severe (most persons with Down syndrome are in the mild to moderate range, and some test in the lower part of the normal range of the general population). About 40 percent of persons with Down syndrome also have heart defects which are usually treatable by surgery or go away over time. Other possible physical problems also present themselves. So, commonly, when a diagnosis of Down syndrome is given to parents, you are "given a list of possible complications, but you don't know which ones your child will have," recalled Soper. "The child might have challenges, but every child does." The book was planned and in the production stage before new guidelines came out this past January from the American College of Obstetricians and Gynecologists saying that all pregnant women, regardless of age, should be offered screening for Down syndrome. Earlier such testing was routinely advised only for women over the age of 35. I was shocked to learn that in the past, about 85-90 percent of women receiving a prenatal diagnosis of Down syndrome terminated their pregnancies. A grassroots movement fearing that many more women will be terminating pregnancies if they learn they are carrying a child with Down syndrome has formed to bring education and awareness to couples. The problem with routine testing of all women is that, according to Soper and many others parents of children with Down syndrome, too often doctors only tell parents about the possible cold, clinical results. They don't tell people about the positive joys and personal triumphs of such children and their families. The advantage of prenatal testing, supporters say, is that it gives new parents time to mourn and adjust to the idea of having a child with Down syndrome, which allows for greater and more immediate bonding after the birth of the child. "Given the fear and dread that commonly surround a diagnosis of Down syndrome, it's clear that the uplifting voices in the book need to be heard--and especially by parents facing this diagnosis for their child," writes Soper. She hopes the book will "show the world that the life of a child with Down syndrome is a life to celebrate. Our agenda is educational," she goes on, "to give glimpses of life behind the scenes with a child with Down syndrome, and to say how much we're enjoying it." As one of the mothers, Jennifer Graf Groneberg, says, "He was presented to us as a set of complications. What they left out was Avery. No one told me how beautiful he would be. No one told me how sensitive he would be. No one told me he would hug me with his whole body, wrapping arms and impossibly nimble legs around me at once, such a strong embrace. No one factored in love." For more on the book, go to http://www.giftsds.segullah.org/ Contributed by Melodie Davis: MelodieD@MennoMedia.org Melodie is the author of eight books and writes a syndicated newspaper column, Another Way