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Disability support group a way forward for Wilson County parents

The Lebanon Democrat - 2/26/2020

Feb. 25--Susann Williams and her son were struggling to find a place in the Wilson County community after he was diagnosed with autism spectrum disorder.

The daily challenges the 7-year-old faces between ASD and his hearing loss made it hard to find common ground with other families, but that all changed when Williams found a support group on Facebook about a year ago.

"Even though I've never met many of these parents, I know them," she said. "I know the apprehension they feel trying to navigate a trip to the local grocery store and the joy they feel when their child or children attend an indoor playground without the fear of being knocked down or treated poorly. This group has given me a community."

More than 1,000 parents like Williams are part of the Middle TN Disability Resources & Support page. Members discuss everything from insurance and therapies to play dates and events as they work to build better lives for their children.

"Raising a child with disabilities is challenging," Wilson County resident and group member Yadira Calderon said. "It takes a lot of work to achieve quality of life. This group fulfills our needs, from comfort and support to detailed information on services needed to keep helping our kids. In this era of information overload, this group streamlines what is useful."

Those parents were able to come together thanks to Nashville resident Amy Chanin, who created the group last year.

"It only has 1,100 members, but it's a tight knit group and we help each other," she said. "It's a judgment free zone, parents are able to express their frustrations and ask about various topics. Lots of people give helpful advice and share resources. Even if we help one family, that's all that matters."

Chanin is familiar with the struggles disability brings, from raising her 6-year-old son with ASD to her own experience as a deaf woman, but that didn't stop things from feeling overwhelming.

"When Vanderbilt diagnosed Ethan with autism, they gave me a big packet and sent us off," she said. "I was told my son needed occupational therapy, speech, feeding therapy, applied behavioral analysis, social skills classes, early intervention and more. It was a lot to take in."

Concerned about how her own disability would work with her son's, Chanin joined several support groups based on those needs and found it took up too much time.

"I just wanted to have one page where all the resources were in front of me that included not only parents, but professionals and teachers as well," she said. "I wanted to have one page that included everybody."

The group's membership reflects Chanin's goal: social workers have joined in with suggestions on behavioral therapy, and special needs advocates are on hand to support parents during important school meetings.

Chanin has also formed connections with parents like Williams who are familiar with both hearing loss and ASD, which makes it easier for her to navigate some of the daily challenges.

"I don't always hear my son, but he tries to use sign language, hand gestures and drawings to tell me what he is trying to say," Chanin said, noting that she wears two cochlear implants to improve her hearing. "They often die, so there are times when I can't hear him. But, I can watch his body language and his facial expressions. I can tell when something will trigger a meltdown and safely remove him from that environment."

Williams has noticed less of those stresses in her son since joining the group, noting that the common ground makes it easier for the children to interact.

"At one time, I thought his peer group was going to be our neighborhood," she said. "But they're not into the same games and activities, and sometimes kids don't know how to interact with a peer who has special needs. They're not trying to be mean or anything, but it's not something they're used to."

One of the moments Williams remembers most is a letter-writing campaign the group took on that led to a theater in Hendersonville screening movies with closed captioning. Since then, members have been able to meet up there so their children with hearing disabilities can enjoy a film together.

Along with those movie nights, Williams' son enjoys weekly swimming and soccer lessons with friends through the YMCA's special needs programs.

"We've had about four or five swimming programs we've tried, and this is the first one where he's happy, learning and excited to swim instead of feeling anxious or overwhelmed by the crowd," she said. "He knows these kids and families, sees them every week and he's excited to get involved -- you don't even have to ask him, you can see it on his face."


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