By Dustin Turner
Lee Schel says the goal of the Augusta Autism and Disabilities Support Group is to provide a safe and comforting place that is free of judgment for people with autism and their families. He knows personally – his son, Evan, is autistic.
“For me personally this group is very therapeutic in that I can go into a room with other adults and have an adult conversation with people who get it and understand what we are going through. When we are all at home, we are dealing with our challenges but to have a conversation with people I can be comfortable with really recharges my batteries.”
Lee and his wife, Svetlana have three children: Natalie, 12; Evan, 10; and Kaylee, 8. When they moved to Augusta from New York a few years ago, they discovered it is not always easy to find resources for children with special needs, so they joined the Augusta Autism and Disabilities Support Group to seek out resources.
“We became regular members a few years back when the group met at Children’s Hospital. We were one of the few regular members and we were usually doing good to have four or five people at a meeting. We spoke to the people organizing the meetings and suggested moving it to a more accessible location with better parking and more space.”
Wesley United Methodist Church on Belair Road has been wonderful, Lee said, in providing them with plenty of room for the group to hold meetings and activities. “So I started helping organize with the people who were doing it. They have since moved away and my wife and I inherited the group. We have grown a lot, which we are very pleased with.”
One of the support group’s primary missions is to let people know they are not alone in their challenges. According to the Centers for Disease Control, one in 68 children is diagnosed with autism which affects children across all social and economic groups. The disorder is 4.5 times more common with boys: 1 in 42 boys and 1 in 189 girls is diagnosed.
The symptoms, Lee says, can vary widely. “Those affected typically have difficulty communicating, forming relationships and even using simple language. They call it a spectrum because the range of symptoms and difficulties is very broad.”
Many children have sensory issues. It is difficult for them to process lights and sounds. Going out in public can be overwhelming to them. Other children are completely non-verbal their whole lives, and others can carry on coherent conversations but exhibit other symptoms. Though verbal, they may not understand social nuance and the basics of forming relationships. “Evan has a very good vocabulary. He will tell us a lot of what he sees, but he cannot tell you how he’s feeling. We ask and he says, “Fine, thank you,” as a conditioned response but he doesn’t understand.”
The Augusta Autism and Disabilities Support Group helps the families of autistic children in many ways. “In our area in Augusta, there are an unbelievable amount of families with special needs children. There is no one place or one doctor in town to give you the diagnosis and resources, so families are often left on their own to figure it out.”
Families who have found the group often find comfort in realizing they are not alone in the challenges they face. “When you don’t know what to do and how to help your child, it’s very isolating. For a lot of families, just to leave their house and go do everyday things is a worrisome and an ordeal. They worry about what people will think if their child has a meltdown in the grocery store, so to come to a setting and meet other families and to not feel alone is very comforting.”
That has been the case for Brad and Heather Jex, whose son, Elijah, 14, is autistic. “It is comforting to find people who understand us, don’t judge us and show compassion,” Heather said at the support group’s Jan. 16 meeting. “We get to bounce ideas off each other and discuss such things as an autistic child transitioning into puberty with parents who have been there.”
The Augusta Autism and Disabilities Support Group has partnered with the Augusta University Occupational Therapy Department to provide free childcare during the meetings for special needs children and their siblings. Occupational therapy students volunteer their time to watch the children and engage them with movies, activities and arts and crafts. Letting siblings attend lets them interact with other siblings of autistic children.
Vusani and Alyson Nlebgwa have two children: Sean, 7, and Kaitlyn, 10. Sean is autistic but both children come to the meetings with their parents.
“Sean is very social,” Vusani said. “He likes to be out of the house and to be in other spaces, even though he is reclusive when he’s there.”
Because Kaitlyn comes, too, she is more aware, Alyson said. “She knows what to expect and has learned how to explain it to others.”
Having free childcare is important, Lee said, because it allows parents to attend the group and receive support and comfort from other parents.
“One of the biggest things we get from the meetings is that it’s a chance to network and share experiences,” Lee said. “Parents have to process a lot of emotions – helplessness, denial, isolation, not knowing what to do for their children. Meeting other families is part of the process to understand, accept your own situation and move forward.”
Lee tries to start off every group meeting by giving parents a chance to celebrate their children’s accomplishments. “Sometimes, we get so caught up in the everyday challenges of life with a special needs child that we forget to be happy for our kids and proud of the improvements they make and the steps they take.”
A special needs child might learn to write his name at 12 years old or might sleep in her own bed for the first time at 14. “We might not realize these are things to celebrate because it’s not the norm but for our children, these are big steps. Our children face so many challenges day after day that we often miss the positive steps and things they’ve learned because we are so worried about the next challenge.”
Lee and Svetlana are working to celebrate Evan’s accomplishments as much as possible. They have even started writing down events to share in the group. “Evan always had a hard time saying yes; he answered everything with no. Then we realized he was starting to say yes. We also realized that we had been so consumed with the challenges that we were missing accomplishments like that. So in the group, we want to let people relax a little and see their own situation in a little different light.”
The Augusta Autism and Disabilities Support Group focuses mostly on autism, but it is designed for families with children who have any special needs, whether it is autism, Down syndrome or learning disabilities. No matter the disability, all the families face many similar struggles and concerns. The group Lee organizes meets twice a month. One meeting usually has a presentation or guest speaker. The other meeting, like the Jan. 16 meeting, is open discussion. People are welcome to discuss and share as much as they want or not at all. Many people find comfort in just being there and listening, Lee said.
A group for adults with autism meets once a month and has started meeting at the same time as the Augusta Autism and Disabilities Support group. Dr. Teal Benevides, an assistant professor of occupational therapy at Augusta University, leads the adult group.
“There seems to be a misconception that autism is a childhood disease, but children with autism grow up to be adults with autism,” Teal said. “And those adults want the same things any adult wants – employment, social connections and relationships.”
Like Lee, Teal works to provide a comforting place for people to find acceptance without judgment and where they can network and find resources. “We discuss a lot things that pertain to adults, such as driving. That can be difficult for people with special needs and it’s not a big deal in big cities with lots of public transportation. In Augusta, though, transportation can be a challenge.”
The last meeting of 2017, however, was a little more laid-back. “We talked about the holidays and laughed a lot,” Teal said. “It gave them a social opportunity that isn’t always there.”
Brandt White, 33, who has Asperger Syndrome, enjoys attending the adult group. “To me, it’s therapeutic. It gives me lots of gratitude and satisfaction because I’m meeting with and helping others with the same struggles. It’s a safe haven for kids with a new diagnosis and people my age.”
At the Augusta Autism and Disabilities Support Group meeting on Jan. 16, people shared their children’s accomplishments, their frustrations with public schools and resources that might be able to help. Lee said he tends to steer the discussion away from medical topics. “There’s a saying that once you’ve met one child with autism, you’ve met one child with autism. In other words, because the spectrum is so broad, what works for one may not work for another.”
Lee uses the meetings and the group’s Facebook group to share resources and activities for special needs children. When he found out that Airstrike was reserving a block of time for special needs children, he made sure the group knew about it. Regal Cinema shows sensory-friendly movies once a month, during which the lights are on, the volume is lower and children can make noise.
Lee said he wants people to know that anyone can post information or questions on the group’s Facebook page. He urges people to ask questions, share experiences and resources and let others know about activities and events for special needs children.
“You find strength, answers and comfort in numbers and it’s snowballing at this point. I get emails weekly from people who have moved into the area and heard about us. Anyone can use our group as a resource to help find what their family needs.”
To families who are considering joining the group, Lee says: “Please come join us and meet other people going through similar challenges. Nothing is expected of you. That’s what we’re all about.”
For more information about the Augusta Autism and Disabilities Support Group, including meeting times, email Lee at firstname.lastname@example.org or go to https://www.facebook.com/ateam.chog/.
This article appears in the February 2018 issue of Augusta Family Magazine.
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