Down syndrome resources on the rise

 

DOVER –– Down Syndrome Awareness Month, lasting the whole of October, is as much about educating the community about Down syndrome as it’s about celebrating the lives of those with Down syndrome.

“When my daughter was born, a lot of people told me how sorry they were for me, but the birth of any child should be celebrated and they should be loved just like any other kid,” Kristin Pidgeon, executive director of the Down Syndrome Association of Delaware said.

Typically, individuals are born with two copies of chromosomes but individuals with the genetic condition known as Down syndrome, possess an extra partial or full chromosome 21.

According to the National Down Syndrome Society, the extra genetic material alters the course of development and causes the characteristics like low muscle tone, small stature and an upward slant to the eyes; although the characteristics effect each individual to a different degree.

Nearly all individuals with Down syndrome also have mild to moderate learning disabilities and are more likely to possess certain medical conditions like congenital heart disease, leukemia and thyroid problems, although many individuals with Down syndrome don’t face medical problems.

Founded in 1979 by parents of children with Down syndrome, DSA has become the state’s go-to resource for families affected by Down syndrome, starting from a child’s diagnosis through their lives.

The statewide non-profit is run primarily by volunteers and acts as a support group for families and an advocate for the acceptance and understanding of individuals with Down syndrome to help them achieve the same level of access and opportunity as their peers.

Modern medical testing allows Down syndrome to be diagnosed before birth, allowing families to learn more about the condition before the arrival of the baby.

“When it comes down to it, a baby with Down syndrome is just like any other baby,” Ms. Pidgeon said. “You take care of them, give them what they need and watch them grow.”

Ms. Pidgeon has first-hand experience, having become involved in DSA back in 2002 after the birth of her daughter, Eliza, who has Down syndrome.

NDSS reports that the chances of a child being born with Down syndrome are one in 350 for women under 35. This chance increases gradually to 1 in 100 by age 40. At age 45 the incidence becomes approximately 1 in 30.

Like many parents of children with Down syndrome, Ms. Pidgeon knew about Eliza’s diagnosis before her birth.

“It was a very stressful pregnancy because I knew that she had Down Syndrome and a heart defect too,” she said. “A lot of people worry about what will happen, but the outcome can be so different. There are many challenges but also a lot of joy that comes with raising a child with Down Syndrome.”

For new parents of children with Down syndrome across the state, DSA provides materials in a New Parent Packet to address questions, concerns and fears many new parents face.

DSA also provides parents with information about all the resources available to their family and child. Parents can even arrange a private consultation with DSA to discuss their concerns and needs for their child.

Although there are many formal resources DSA has to offer, one of the most beneficial is the support families receive from other members.

“All the families involved, we all have this special bond and often the best advice and lessons you’ll learn as a parent come from other families that have children of their own with Down syndrome,” Ms. Pidgeon said.

DSA’s services don’t end with childhood. They have activities for teens and young adults like dances and sports. Young adults who excel in sports may even participate in the Special Olympics.

NDSS reports that in the 1980s, the expected lifespan of an individual was only 25 but today, their life expectancy is up to 60 years.

With the increasing number of adults with Down syndrome more services are becoming available. For example, Christiana Care recently opened an adult Down syndrome clinic. State services are also available to help with education and work placement to ensure individuals with Down syndrome are productive, valued members of their communities.

There are currently about half a million individuals with Down syndrome in the United States, many of whom live fulfilling lives that include taking full-inclusion classes at school, working in the general workforce and handling many day to day tasks independently.

DSA is always working to provide support and education and as a non-profit hosts many fundraisers and awareness events. DSA’s next community event is a 1, 5 or 10K walk or run at Rockford Park in Wilmington on Oct 17. Registration is from 7:30 to 9:15 a.m. on Saturday morning.

For more information about the walk/run or the services and resources offered by DSA, contact them at 302-995-1004 or info@dsadelaware.org.

Reach staff writer Ashton Brown at abrown@newszap.com. Follow @AshtonReports on Twitter.

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