Misconceptions, assumptions plague understanding of children with Down syndrome

Sarah Kuntze taught early childhood special education for years before her son Carter was diagnosed with Down syndrome at birth in 2005.

Even so, she says the immediate impression she and her husband had was probably similar to that of most other people: largely clouded by assumptions and popular misconceptions.

She said one of the hardest parts was the uncertainty of it all. The condition produces a wide range of characteristics, and just as do all other children, each child with Down syndrome faces different challenges.

"I knew the challenges he was going to have to face," she said.

What she didn't realize was that many of her anxieties were tied to stereotypes left over from an era of medical misunderstanding and arcane social practices. It was not uncommon for parents in the not-so-distant past to have their child institutionalized, convinced the condition precluded their child's shot at a productive, fruitful life.

Carter Kuntze and his sister, Camryn, relax on the couch Monday in their Jackson home. (Laura Simon)

But Kuntze found out the truth about Down syndrome lies worlds away from the popular stereotypes. Many people don't think to re-evaluate their assumptions regarding the condition, but October is Down Syndrome Awareness Month: a time for confronting misconceptions and celebrating the strides people with Down syndrome have made in terms of progress and quality of life.

"[Children with Down syndrome] do everything else any other children are going to do," she said. "It's just going to take them a little bit longer. We have our fair share of challenges, but I don't think it's harder or more than other children; it's just different."

Kali Francis, pediatrician at Southeast Hospital, explained how the condition is caused by having an extra 21st chromosome, which can happen a variety of ways and produce differing effects. Even though Down syndrome almost always causes issues in the development of muscle tone, hearing and respiratory systems, and cognitive abilities, these are by no means automatically debilitating. In many instances, children with Down syndrome are capable, in school and later in society.

"To be honest, it's kind of hard to predict from the get-go what the eventual outcome might be," she said. "There are patients who are able to live on their own, and others need a little more help than that."

She also explained that with increasing understanding of the condition, early diagnosis and intervention has been shown to drastically improve quality of life.

Kuntze said that Carter, now 7 years old, is just as engaged as his peers. In school, he reads and takes tests with the rest of his second-grade class. On the pitch, he's scored a goal for his soccer team.

"He wants to do things," she said. "He's got a drive like nobody I've ever met."

There's another mistaken assumption that children with Down syndrome are perpetually happy and carefree, but Kuntze knows from experience that Carter has the same range of emotions as any other kid.

"My son is very stubborn at times," she said. "But is that his condition, or is that because he gets it from me?"

She said that in the end, she expects the same things from Carter that she does from his sister, Camryn, namely to give their best effort and not to give up.

And she said one of the best parts of Carter's ongoing journey has been the way his peers and others in the community have included him without a second thought.

"I grew up in Cape and I have been completely impressed with the people," she said. "You know how kids can be, but it's not like that. Everyone from the coaches to the fans to the referees [at Carter's soccer game]. I was in awe. It brought a tear to my eye."

tgraef@semissourian.com