Courtesy of Gayle Webster
Each year, around 6,000 babies are born with Down syndrome, the most common chromosomal disorder in the United States, according to the CDC.
About 50 percent of babies born with Down syndrome are also born with a congenital heart defect. Children with down syndrome are at higher risk for obstructive sleep apnea and ear infections,among other conditions.
Unfortunately, many children and adults with Down syndrome also face another challenge: societal stigmatization. But for Gayle and Bob Webster, whose son Chris was born with an extra chromosome and two holes in his heart, that’s never been anything to be ashamed of.
Chris has never backed down from a challenge. At just 5 months old, Chris,now 16, underwent a successful heart surgery – and that was just the beginning. He has overcome many challenges with the support of his family, including his younger sister, Caitlyn. Chris, a sophomore at West High School in Columbus, has never had to retake a year of school.
Last year, for World Down Syndrome Day on March 21, Gayle made a large sign display in the family’s Grove City yard to honor her son.
“I just wanted to celebrate, since it was World Down Syndrome Day, celebrate for Chris,” she says. “He was all excited. He likes any big sign for him now, especially for his birthday and stuff like that.”
Chris has plenty of personality to celebrate, his mom says. Every day after school, he enjoys working up a sweat dancing along to YouTube videos and music in his bedroom. Chris is interested in one day pursuing a career related to the police or caring for pets.
“He wants to wear a uniform, since his dad (who works in information technology) wears a uniform at work,” Gayle says.
Finding a Community
Raising a child with Down syndrome isn't always easy.
“Every day is a new day,” she says.“Every day is a challenge.”
Fortunately, the Websters found a supportive community made up of parents like them. Early on, they attended Little Buddies Parent Resource Group sessions at the Down Syndrome Association of Central Ohio (DSACO).
“We would talk about how (our kids were) progressing, what type of surgeries they’re doing,” Gayle says. “It was very helpful at the beginning when they were just babies and figuring out what to do, what to expect, what doctors are good to go see.”
DSACO aims to help families of children with Down syndrome navigate challenges and answer questions they may have. The organization acts much like a concierge, says President KariJones, offering personalized services and detailed assistance to families.
“It’s an unexpected diagnosis when someone finds out that their child or loved one has Down syndrome,” Jones says. “There’s a whole world they never really had to know about, but now they don't even know how to begin to navigate it. We’re there to really help them wherever that may be.”
A Personal Matter
As president of DSACO, Jones is deeply embedded in the developmental disability community, but she’s long had a personal tie to the organization.
“My family was welcomed by DSACOin 1985 when (my brother) Alex was born,” she says. “I’ve kind of grownup not just with this organization but inthis community, and I don’t really know any different.”
While DSACO provides resources for families, Jones stresses that community support is just as important to keep families and children from feeling alone.
The organization collaborates with community partners to encourage inclusivity and awareness of the issues faced by people with Down syndrome. Additionally, DSACO works to fill gaps where resources aren’t commonly available, which includes offering supportive spaces for family members to talk with others who may share experiences.
Both personally and professionally, Jones has seen the value of inclusion. While attention for diversity, equity and inclusion has increased in recent years, she says there’s still a long way to go.
“As a family member, and speaking on behalf of the thousands of family members that we serve, we are all proud and grateful and feel like better people because of our loved ones with Down syndrome, and there’s a reason for that,” Jones says. “The community has a lot to gain by taking that first step out of their comfort zone to get to know people with developmental disabilities and with Down syndrome.”
For Gayle, those first steps toward finding a supportive group have continued to prove significant. She says she is still able to reach out to the same group of parents that she attended Little Buddiesclass with. Fifteen years later, many of them keep in touch.
“Some of us still talk to each other, from the first group, and if we have an issue we go ahead and ask them,” Gayle says.
This year for World Down SyndromeDay, Gayle says she plans to celebrate Chris with an even bigger sign.
Courtesy of Gayle Webster
Claire Miller is an editor at CitySceneMedia Group. Feedback welcome a tcmiller@cityscenemediagroup.com.
