PHOENIX (3TV/CBS 5) - When a child gets a diagnosis as serious and as challenging as Down syndrome, their parents often yearn for support that only other families in a similar situation can give. That’s the whole premise behind Down syndrome support groups. Their presence online has been ballooning in 2018.
A group of moms of children with Down syndrome gathered for dinner and a white elephant gift exchange in Phoenix Thursday night. It’s just one of the many get-togethers they have each year.
“There’s somebody out there that is going through what you’re going through and can help guide you,” said Louise Bowden, executive director of Down Syndrome Network Arizona.
Holly Patel has a 10-year-old daughter with Down syndrome and when her family moved to Arizona five years ago, she immediately sought out a support group.
“You need extra help. You need different information,” she said. “There are lots of acronyms that you have to learn. There are lots of doctors that you have to see.”
More and more, that support is coming online -- in private groups and chats that allow families to open up with not only the emotional questions, but the everyday, logistical ones, too. For example, because Down syndrome often causes a flat nose bridge, Patel’s daughter’s glasses kept falling off. The online network helped her find exactly the type of glasses she needed to get and where to find them.
“I would say that the online community is more valuable and more important than actually the in-person relationships because that’s what you do every day,” she said. “I don’t get to see these moms every day.”
The support groups also help match kids with down syndrome with others their own age. That’s important because in elementary school kids are at about the same developmental stage as their friends who have Down syndrome. But in middle school or high school, those same friends transition into more of an ‘older sibling’ to their friends with Down syndrome. The support networks help the kids with the genetic disorder so they have peers outside of school who are developing right along with them.
Patel points out one of the important parts of these social networks and help groups is paying it forward to other parents who are looking for help.