When you hear the phrase “Down syndrome,” what thoughts go through your mind? There are a lot of misconceptions about people with Down syndrome, a genetic condition where a baby is born with three, rather than two, copies of Chromosome 21. The condition comes with physical markers as well as cognitive delays and increased risk for other medical issues. But individuals with Down syndrome attend school, go to work and contribute to society in many ways. Since October is Down Syndrome Awareness Month, I took the opportunity to talk to a local nonprofit organization that supports these individuals.
The Down Syndrome Association of Central California works with about 1,600 members across the Valley. Originally founded in 1999 as the Fresno Area Down Syndrome Society, it changed its name in 2009 as it expanded services to include all six counties of the Valley.
DSACC’s mission is to enhance the quality of life for people and families whose lives are touched by Down syndrome. They provide programs that promote greater awareness of the potential that individuals with Down syndrome have. They also strive to educate medical professionals on how to communicate with and reach families dealing with a Down syndrome diagnosis.
“We provide kind of like a first contact,” DSACC Program Director Jennifer Whiting said. “So we’ve got educational materials that we give to doctors because there’s just a gross amount of information. Doctors forget that families are overwhelmed, so we go out and talk to them about how to deliver a diagnosis.”
The organization has developed a comprehensive package that they provide to medical facilities to give to families. It includes many pages of facts, resources and other information; it even has a brochure targeted at grandparents.
There’s a story in particular that stands out from the packet. It’s called “Welcome to Holland.” It describes a scenario in which a family spends time preparing for a trip to Italy, only to find when they land that they have arrived in Holland. Equally beautiful, but totally different. The author likens this change in destination to what happens to new parents who welcome a baby with Down syndrome into the world.
One of the key elements to DSACC is providing families with a place where they can gather with a community of others who will understand them. They have play groups, support groups, activities and social clubs. They also have a lending library on site with educational books, and a space for parents to meet one on one.
“I think we’ve made a lot of parents find a smaller group that really can understand and support what they’re going through,” Whiting said. “Until you’ve had a child with special needs, there’s really no way that you understand what other families are going through with any disability. And from my experience, a lot of parents feel really isolated and overwhelmed. … Sometimes they have to go through a couple extra hoops, and I think one of our strengths has been connecting our families to other families.”
This community of families and their supporters will be out at the Clovis Rodeo Grounds for DSACC’s annual Step Up For Down Syndrome event this Saturday. This fundraiser includes a 5K walk/run and a one-mile awareness walk for families. Signs will be set along the Clovis trail where the 5K will take place, as well as the walk around Clark Intermediate and the rodeo grounds. The great thing about this event is that it’s open for runners, individuals with Down syndrome AND those of us who are totally athletically incompetent!
After the race and walk, there will be dancing, vendors, food for purchase, a performance by Break the Barriers, a kid zone, face painting and more.
“We have something called the possibilities tent,” Whiting said. “That’s where our members with Down syndrome have created displays or art pieces that showcase their talents, their hobbies, their passions and kind of dispel some of the stigma around someone who has Down syndrome, thinking that they can’t do anything. It’s not the case.”
You can find more information and register for the run or walk here. Use the coupon code STEPUP3OFF for $3 off the registration fee through October 22nd. After that, you will have to register on-site the morning of the event. All money raised will go directly back to serving families in the Central Valley. DSACC is 100% local and not associated with any national organizations.
If you can’t make the event or want to help out in other ways, you can always become a volunteer or donate money and supplies.
“We are always open to donations of any sort,” Whiting said. “It could be from a box of paper clips to up to thousands or hundreds of dollars. But [also] volunteering … or just spreading the word and accepting and including people who have Down syndrome.”
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