Overview of AbilityPath’s Report and Guide to Obesity and Children with Developmental Disabilities
Sam, a 19-year-old with Down syndrome, struggles to stay fit and healthy, despite an active schedule that includes yoga, bowling, swimming, and drama. At 5’6, he weighs about 190 pounds and while he likes to stay active, Sam has health challenges that make this difficult; his poor vision makes him worry about his balance, and his flat feet make running difficult. When he was 15, Sam’s parents saw that he was becoming overweight and enrolled him in Health U., a program created by an interdisciplinary research team at the University of Massachusetts Medical School’s Eunice Kennedy Shriver Center. There Sam learned about the importance of fitness and how to prepare and eat healthy foods. Four years later, Sam’s weight is stable and he has found a variety of ways to stay active, although it’s not always easy for him to put the dietary lessons into practice. “I love eating junk food,” he says. “I want to make good choices like eating bananas, grapes, strawberries, broccoli and celery. My mom makes me eat salad. It’s not my favorite at all.” Sam sometimes calls his mother the “food police,” but he offers sound advice to other young people with developmental disabilities. “I would tell them to stay healthy and stay strong and stay active,” he says. “Tell them to exercise and work out with me and put their fears aside.”
Sam’s story is unusual in the developmental disabilities and disabilities community. His parents intervened early and they now spend hours driving him to his many inclusive activities. He leads a very active life. But many, if not most children with developmental disabilities, face multiple challenges when it comes to maintaining a healthy weight. Food aversions, the side effects of medications, and mobility limitations make them even more susceptible to being overweight or obese than other children, who are already facing a nationwide epidemic of obesity. One study found that among teens with Down syndrome, 86% were either overweight or obese. Those figures are just as startling for children with other disabilities. According to the Centers for Disease Control and Prevention (CDC), children with disabilities are 38% more likely to be obese than their counterparts. “As a community, we must recognize the special dangers that obesity presents to our children,” says Sheryl Young, CEO of Abilitypath.org, an online resource and social community for parents and professionals serving the needs of adults and children with disabilities and the organization sponsoring this report. “This is an epidemic in our own homes and we can and must find solutions.”
Thirteen percent of U.S. families have a child with a disability. Yet too often, children with developmental disabilities have been left out of the obesity discussion. To help families, schools, physicians, service providers, policymakers, and journalists understand both the severity of the problem and the range of solutions, AbilityPath interviewed physicians, psychologists, public health experts, dietitians, researchers, advocates and parents. Young says that over the years, the staff at AbilityPath has heard many parents of children with developmental disabilities talk about how hard it is to keep their children at a healthy weight. “How can they help them make healthy food choices? How can they have weight control, especially for those who are on medication? How can they have more movement that’s fun for them and safe?” she asks.
While children with developmental disabilities are children first and disabled second, they require an extra level of thoughtfulness, advocacy, and attention in order to maintain a healthy weight. Solutions that work for typically-developing children may not work for them without modification, and those solutions that do work may not be available in their community.