Living with Down Syndrome

In autumn of last year I officiated a wedding. The bride’s sister had gotten married only months before. Two brides from one family in one year are not remarkable, but the younger sister (who got married first) and her husband are. They met at a college within a university in Missouri that was created for people with special needs; the groom has Down syndrome and studied musical theatre, and the bride has cerebral palsy and developmental delays and studied sign language interpretation.

For the over 400,000 Americans living with Down syndrome (individuals who have a full or partial extra copy of chromosome 21) today life is very different than it would have been for them even half a century ago. Many people with Down syndrome now graduate high school (with many being integrated into regular classes), some take college classes, and “one in five has a job,” says pediatrician Kathryn Ostermaier, medical director of the Texas Children's Hospital Down Syndrome Clinic and an assistant professor at Baylor University. In March 2013, a boy with Down syndrome climbed to base camp of Mount Everest, and in May 2013 a woman with Down syndrome received an honorary doctorate from the University of Portland in Oregon.

Children diagnosed with Down syndrome can now receive early intervention that includes physical therapy, occupational therapy, speech and language therapy, and feeding and swallowing therapy (to help with the problems created by low muscle tone). Down syndrome itself and what babies and children with it needed was not as well understood years ago; advances in medicine, in societal understanding, and in educational legislation over the last decades have made accomplishments like the ones aforementioned possible.

The National Down Syndrome Society’s website (ndss.org) says, “Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.”  NDSS is the national advocacy group whose legislative agenda focuses on “improving health outcomes and quality of life for people with Down syndrome, improving educational opportunities for people with Down syndrome, increasing opportunities for adults with Down syndrome and creating an economic future for people with Down syndrome.”

Each month NDSS offers educational webinars free of charge. Some recent ones include a live dialogue on World Down Syndrome Day (March 19, 2015) with Chris Burke (who played Corky on the television show Life Goes On), about federal grant educational projects, on sign language, about the ABLE Act, about health transitions from pediatric to adult and about teaching someone of any ability how to ride a bike.

Local resources include the Down Syndrome Center at Children’s Hospital of Pittsburgh (http://www.chp.edu/CHP/downsyndrome) and the Down Syndrome Association of Pittsburgh (http://dsapgh.org). The Down Syndrome Center’s staff at Children’s Hospital:

• Provides specialty health care to children and adolescents that is specific to conditions related to Down syndrome
• Consults with families regarding challenging developmental and behavioral concerns in children with Down syndrome
• Provides information to families about Down syndrome
• Offers support and follow-up to children recovering from an illness or surgery at the hospital
• Assists families in locating community services and resources
• Works with families with adolescents in developing transition plans that identify health care and community resources, as necessary, for adult health and well-being, according to their website.

The Down Syndrome Association of Pittsburgh offers support groups for parents, relatives, friends, siblings and professionals and other interested members of the community in Allegheny, Armstrong, Beaver, Blair, Butler, Lawrence, Mercer and Westmoreland Counties. They also do three fundraisers per year, including a golf outing, a day at Idlewild Park and SoakZone and Three Rivers Dash for Down Syndrome.

Sheila Cannon at the Down Syndrome Association of Pittsburgh, is the contact person for a special camp for athletes ages 15 to 30. The event is called Football Camp for the Stars, and it is hosted by Thomas Jefferson and Woodland Hills High Schools. Call 412.692.7963 or write Sheila.cannon@chp.edu for more information.

The Community Colleges of Allegheny County, as a part of their continuing education for adults with special needs program offers classes in everything from money management to jewelry making. Their website ccac.edu has more information.

As for the couple at the beginning of this article, they took a caregiver on their Hawaiian honeymoon to help with the bride’s mobility challenges, but they live by themselves in an apartment in Washington, D.C., where he has a job and she takes adult extension classes at Gallaudet University. They take the Metro, buy their own groceries and cook their own meals or eat out occasionally, maneuver their way through security lines and airports and lead very usual lives. Or as Chris Burke has said, “Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life.”