World Down Syndrome Awareness Day

Today's post is by guest author, Madonna Dries Christensen. March 21 is a special day. The date ( 3-21) was chosen to represent "the 3 copies of chromosome 21, which is unique to people with Down Syndrome," according to the author. As you look at these beautiful happy faces, let's all remember to stop using the "R" word as a form of insulting others. As you will see, knowing a person with this syndrome is an honor, rather than an insult.

The Many Faces Of Down Syndrome

By Madonna Dries Christensen

        When Dean was born in 1952, the doctor didn’t tell his parents that he had Down syndrome. When they were told, at three months, the doctor used the term Mongoloid. He said that Dean wouldn’t live beyond the age of five, and advised an institution. Dean's mother reasoned that if he were going to die young, she would hold him close for whatever time he had. By age eight he was difficult to discipline, and his parents made the heart-wrenching decision to place him in Columbus Developmental Center in Columbus, Ohio. 

        Dean’s sister, then 11, recalls feeling responsible for him, and that it was stressful having him at home. With the exception of her best friends, kids made fun of Dean. She admits to being relieved when he left, quickly adding that as an adult she realized he gave her something valuable: the gift of empathy, and the calling to pursue a Masters in Special Education.   

        As an adult, Dean’s IQ was about 35, akin to a two-year-old. He held simple jobs at the Center. He loved being outdoors; he followed sports on television, competed in Special Olympics softball and running, and enjoyed music. His family regularly visited him, and his friends at the Center loved him, too.  

 

         Dean died at age 58, in 2010. I’d never met my husband’s nephew. He was, to me, a cute child in grainy black and white photos. 

        In 2004, my second grandchild was born with DS. Unlike 50 years earlier, my daughter and her husband were flooded with support and information from doctors, family, friends, and even strangers via online networks. We quickly learned about the importance of early intervention in physical and speech therapy. My eyes, mind, and heart were opened to new experiences and challenges.     

        At three months, Sarah underwent open heart surgery. Post-surgery, her lungs collapsed and she contracted sepsis. She rallied and her heart now functions normally. Fortunately, she has none of the medical problems common to DS, nor is she physically handicapped. She rides a bike with training wheels, swims, dives, hikes, jumps on the trampoline, ice skates, the full gamut of activity. In public, people have approached my daughter and said that watching Sarah gives them hope for the child with DS who has joined their family.

        That’s the rosy face of DS. Cognitively, Sarah is not on par with typical peers. Her First Grade schooling is divided between the regular classroom and Special Ed. However, she’s learning to read, does beginning math, attends Sunday school, and participates in Brownie Scouts. She dotes on her younger brother, William, and has friends who have DS and friends who do not. Conner, the boy she loves and who loves her, has DS. 

         Sarah’s older sister (by 16 months) tends to look after her, but not because of DS; she doesn’t yet comprehend that aspect. It’s her nature to mother children younger and smaller. But my daughter feels that the experience will help Grace understand fairness and compassion. As it did for Dean's sister.

        DS is the most common genetic condition. World-wide, about five million people have DS. Unlike earlier eras, we see their distinctive faces on magazine covers and in television and movies. In school, children with DS participate in music, drama, sports, and cheerleading. They are elected Prom King and Queen; they graduate from high school. Some attend college or hold jobs in the community and live independently. A few marry. Some serve as ambassadors for Special Olympics or advocates for awareness. DS is no longer clear-cut black and white; it’s full color, and bursting with life.

        An organization called People First encourages us to say “A person with Down syndrome,” not “A Down syndrome person.” Another group is dedicated to erasing the r-word (retarded/retard) from our vocabulary and replacing it with “Respect.” Congress passed a bill to strike the word retarded from federal legislation. We are reminded that DS is not an illness or an affliction, and that people with DS are more like others than different.

        Despite the available support, my daughter says, “Having children with special needs can be isolating. People make assumptions about what it’s like—either that it’s horrible or that it’s simply giving a little extra help with homework. It’s neither. With that extra chromosome comes a host of little extras. Imagine any typical parent’s hectic schedule, and then add annual visits to the cardiologist, ophthalmologist, geneticist, and ENT; weekly speech, physical and/or occupational therapy; annual IEP meetings at school; frequent insurance and educational paperwork; extra time looking for clothes that fit (or altering them); and plenty of extra time reminding or assisting with ordinary activities like getting dressed or brushing teeth.

        “And there are positive extras: extra bonds with parents in the same situation, extra happiness when your child reaches a long-strived for milestone, extra excitement when your child is invited to a classmate’s party simply because “she’s my friend,” and extra pride when your typical children advocate for their sibling.”

        For this grandmother, there is extra love from a little girl who greets me with her big smile and an enthusiastic “Hi, Granny.”