Since all three of their sons were diagnosed with autism starting in 2010, John and Christal Barton have done all they can to connect themselves and their children with the best resources and care West Virginia has to offer.
But after years of research and doctor’s visits, the couple started noticing a hole.
Although there were many specific therapies available — occupational, speech, physical therapy — there wasn’t much available for the parents, like nearby support groups for families raising children with autism in Putnam County, where the Bartons live. And frankly, John said, they need support just as much as their kids.
Raising one child with autism can be lonely and isolating, John said. Imagine multiplying that number by three.
“When you’re talking about autism and disabilities that specifically affect social skills and connections with other people … you’re talking about something that creates an isolated existence,” John said.
Thanks to a $2,000 mini-grant the Bartons received from Families Leading Change, the couple has created a group to help address the isolation and loneliness that autism can cause for both parents and their kids. Families Leading Change (FLC) is a statewide organization working to give families a voice in schools to create a system change that will improve education. One way FLC works to support greater parent engagement in schools is through their mini-grant program, which helps family-led teams start sustainable programs and projects
in their local schools or through after-school programs.
Starting in December 2017, John and Christal launched the Gaming Social Skills Group in Putnam County in partnership with Winfield Middle and Winfield High School to support families with autism in the region. Families like the Bartons meet once a month in Teays Valley. Around 10 to 20 people attend. The kids play collaborative, multi-player video games, which John oversees. They chose video games as a way to help initiate socialization, John said, because it’s a form of play many children on the spectrum, including his own, feel comfortable doing. But instead of playing at home in isolation, kids play in the same room with others. They talk to one another about the game, and offer ideas.
As for the parents, while their children are playing games, they spend the group time talking, sharing stories and frustrations, hearing from other parents going through what they’re going through. The group meetings have been known to go over on time because the kids were having fun and, well, the parents just wanted to keep talking. “We have been raising these boys for over a decade, and we know how isolating it is,” Christal said. “We have to create that community so that people know they are not alone.”
The FLC mini-grant the Bartons received helped them pay for televisions, gaming systems and controllers. FLC started its mini-grant program in 2017. The Bartons were one of 53 parent-led groups throughout the state to receive the first wave of funding. In 2017, The Greater Kanawha Valley Foundation funded the 11 FLC mini-grants awarded to family teams, including the Bartons, in the Kanawha Valley.
