Down Syndrome is a complicated condition surrounded by myths and confusion, though nationwide there are organizations dedicated to spreading awareness and support.
At their core is a belief in community and equal opportunity.
October is Down Syndrome Awareness Month. According to the Centers for Disease Control and Prevention, Down Syndrome is a condition in which a person has an extra chromosome, or a small package of genes in the body.
Region V Services and Down Syndrome Advocates in Action in Nebraska are two organizations in Southeast Nebraska working to spread awareness and support to folks with Down Syndrome.
The main goal of these groups is to promote community, provide networking opportunities and work toward helping finding employment and, ultimately, independence.
Angie Wiley is the vice-president and co-founder of DSAANE. She said there are two groups in the Lincoln area, as well as one in Kearny.
The groups participate in activities such as weekly Zoom calls, a yearly buddy walk, and last weekend they held a trunk or treat event.
Wiley said the Zoom calls were an unintended benefit of COVID, when DSAANE started the calls to avoid in-person meetings but soon realized they provided people with an easier alternative than to show up in-person.
“We do karaoke. We do different games. It’s just fun,” Wiley said. “It’s also a time to connect about the week, what was good and what was bad.”
Sarah Railsback is the Marketing and Development Manager, and Victoria Perry is the York and Seward Area Director at Region V Services in Seward.
Perry said Region V offers various services based on varying situations, including day supports and programs including employment services.
She said Region V also offers residential services, including group homes to encourage independence and solidarity.
Perry said one of their proudest moments is when someone they are working with finds a job.
“Employment is always a big success. It is a big part of all of our lives, and our days are focused around work, coworkers and goals,” Perry said. “It gives people purpose, and then they’re proud to come back and tell people about what they did in their day and who they met.”
Railsback said awareness and opportunities are important for people with Down Syndrome, as the ideal outcome for people they work with is inclusion and integration within their communities.
“We want the individuals that we support to live out in the community. They have goals and aspirations that they want to reach just like you or I,” Railsback said. “Part of that is just being a valued member of the community that they live in.”
Wiley said there are many common myths about people with Down Syndrome. She said the biggest myth is that people with the condition need to be educated separately.
“One of the things we really work for is support in the school system, because kids with Down Syndrome do so much better when raised and educated in an inclusive environment,” Wiley said.
To combat some of these myths, she said the DSAANE Facebook page has been posting one fact a day about Down Syndrome. She said the best way to combat myths, though, is to meet somebody with the condition personally.
“People with Down Syndrome have value. I’ve met so many amazing people who have also happened to have it,” Wiley said. “Get a friend with Down Syndrome. You’ll be amazed at how much they might change your life.”
She said her son, Ben, is too young to be a direct member of the groups, but he shows up and attends meetings and has been meeting classmates at school.
As more of his classmates got to know him, Wiley said this exposure helped his peers become more accepting and comfortable talking to him.
“He actually got to go to homecoming for the first time,” Wiley said. “His teacher said kids came up to her and told her homecoming was way more fun with Ben there.”
As people become exposed to people with Down Syndrome, Wiley said the stigma and misconceptions surrounding the condition tend to decrease.
Perry said a large part of it is taking people for people and not people with a condition.
“We try to focus just on services and people and not necessarily disabilities, because we’re very focused on ‘nobody’s different, everybody’s the same, all inclusive,’” Perry said.
Wiley said her most heartwarming moment in her line of work involved her friend Grant, who loved wrestling but was unable to participate in wrestling events. She said at a district wrestling tournament, one wrestler who was beaten out of going to state saw Grant in a singlet and organized a referee and a mat to give Grant a match.
“It was just so heartwarming to see this kid who was supposed to have gone on to state and was now done with his wrestling career have the presence of mind to make this happen for Grant because he knew how much he wanted to wrestle.” Wiley said.
While October is Down Syndrome Awareness Month, Wiley said being supportive and aware is a year-round endeavor that goes both ways.
She referred to a movement within the community called the “Lucky Few,” which has inspired parents and supporters to get tattoos with three arrows pointing in the same direction to show solidarity.
“We always call it the ‘Lucky Few’ after a book written by a mom,” Wiley said. “It’s said that it’s being part of a club you didn’t know you wanted to be in until you’re there.”
