July 11, 2007 12:15am CST
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
• United States
11 Jul 07
At one of the daycares I used to work at, I had a child in my room with a disorder of some kind. I don't think it was Down Syndrome though. His mother was in denial that there was anything wrong and it made teaching that class very difficult and stressful. He was extremely aggressive and was alwasy attacking the other kids. He would not be able to focus his attention and was nearly 5 years old and couldn't carry a conversation. He couldn't really even speak in complete sentences. It was so sad and I wish his mother had been morewilling to help, even if it was painful for her. He deserved the help. I think books, like the Down book, is a great rsource for parents and family, and even educators, to better familiarize themselves with different disorders. I have had to deal with several cases of Autistic(sp?) people too. It is never easy, but with knowledge you can cope. It can be a beautiful thing to see them learn and grasp concepts that they didn't have before. Thank you for this post Rozie.:)
11 Jul 07
My sister is a pre-school teacher and she went through the exact same experience as you. I remember her telling me that the child would take all of her attention from the rest of the kids. One day that had to take the children on a field trip and it left my sister so exhausted. I think that they finally talked to the mom and had the child tested and transfered to a regular school. It is very hard on every one involved, especially, the parents. I know that I would have a hard time accepting that my child had special needs. But, I know that at some point I would have to, because being in denial is not going to help the child one bit. Once you accept the reality, then you can start looking at options. I worked for Developmentally Disabled people once, it was rewarding to see them do new things that they couldn't before, just like you said.
• United States
12 Jul 07
It does make giving equal attention very difficult, but it is sad to know that the parent just doesn't understand and accept it either. I also know another family where the mother is in denial. Everyone tries to tell her gently that the child needs to be tested. She is kind of a proud woman though and doesn't think she needs to get the child help, which is a shame. People and their pride. You have to do what is best for the child at all costs.
• United States
11 Jul 07
I have worked with a lot of Down's children of all ages because of the their face shape they usually have small jaws and have sleep apnea. Some of them take well to the cpap. CPAP stands for Continuous Positive Airway Pressure. It is a divice that blows air into the nose and down the airway keeping it opened at night so the person with sleep apnea can sleep. What bathers me with people with Down's is if they are low functioning who is going to take care of them when their parents die? I have seen 70 year old mothers taking care of their mentally retarted or Down's adults who are like children. That is what breaks my heart. Sometimes a sibling will take over the care of brother or sister and sometimes there is no one and the person has to go into a home. I find that real sad.
• United States
11 Jul 07
I took care of two gentlemen with Down Syndrome for 4 years. Their sweet nature and willingness to please others is what I see first. Their smiling faces always brightened mine. One of ours was a hugger. LOL I giggle just thinking about it. A very well written discussion. Thanks.