BENTONVILLE - An autism diagnosis for a child in rural Arkansas can mean a major lifestyle change - greater home security, fewer public outings and sometimes a move to an urban area.
That’s exactly what brought John Leachman, now executive director of Autism Involves Me, to Northwest Arkansas. He knew that the rural school systems wouldn’t have the resources that his son would need in the future.
“When you walk out of that diagnosis center with this handful of paperwork,you’re just kind of lost,” Leachman said. “It’s very similar to having a child for the first time because … you’re feeling your way around it. But you look at the stats, and you say ‘I know I’m not alone,’ but you feel that you are.”
When he arrived in the area he contacted Autism Involves Me, then known as Northwest Arkansas Autism Support Group, and was relieved to find a way to connect with other families affected by autism. It was a community of its own, parents empathizing and relating through their struggles.
Leachman said that atthe first fundraising walk he realized the impact of autism.
“To see thousands of people come out, it’s bigger than what we’re seeing day in and day out at our meetings,” Leachman said. “There’s a bigger need, a desire in the community to be connected to something bigger.”
Community is essential to these families because autism is a disease without physically distinguishable characteristics, and can lead to some snap judgments by outsiders.
“You go out into society and it’s obvious your child doesn’t fit the normal stamp that others would put on them,” he said. “So you tend to recluse a little bit because trips to Wal-Mart, the mall or whatever … you can’t have them in the same circumstance as a family with a ‘typical’ child.”
Back then, the group had only one major fun activity each year, the autism awareness walk and 5K in April, as well as weekly meetings on Tuesday nights, which was a problem for any parent who either worked or lived outside the immediate areas of Rogers and Bentonville. More than that, there were no activities for their children.
Leachman joined the board of directors before taking on the role of director, and helped to make the organization more practical. They switched weekly meetings to Saturdays so families could make it regardless of work schedule or home location, added monthly outings that included entertainment -usually a trip to the Jump Zone - for their children as parents connected, and expanded activities at the annual walk, making it more of a festival and celebration than an average fundraiser.
“I shouldn’t have to, as a parent, wait until April every year before I can go out and take my son or daughter to something fun and connect with other parents,” he said.
In the past, some 3,000 people rallied at the walk to raise about $20,000 for the organization. This year organizers hope to top that. The fifth annual Autism Involves Me Walk and Silent Auction will include crafts, an inflatable play zone, petting zoo and other kid-centric activities, as well as a raffle and a community resource fair for the adults. It will be from 8:30 a.m. to 12:30 p.m. April 12 at Grace Point Church in Bentonville.
Autism Involves Me now applies for grants to provide families with technology and supplies. Most recently in December, they awarded iPads and trampolines, vouchers for therapy services and horseback lessons - all doctor or therapist recommended products and services, the kinds ofthings that attempt to make raising children with autism a more normalized or typical parenting process.
“The most challenging part [about being a parent of an autistic child] is finding ways to feel normal,” Leachman said. “Being able to go to an event, go to the Fourth of July celebration and watch fireworks - those types of things are out of his routine. … It’s trying to insert yourself into normal segments of life and also take care of the needs of your child.
“To be normal in every facet of society … it’s nearly impossible. You have to structure everything around it. It takes a different frame of thought or a lens you have to put everything through.”
Grocery shopping and any other public outing for families of autistic children is an opportunity for strangers to interact with them, and can quickly become a stressful situation when they are judged (if inadvertently) for abnormal behavior.
The nonprofit hopes toeducate parents of autistic children about legislation that is relevant to them, in hopes that they can enact political changes that improve their lives.
“We get to make a difference in somebody else’s life,” Leachman said. “Hopefully we get to a place where nobody walks away with a diagnosis of a child with autism and doesn’t have a local resource to turn to.” For more information, see autisminvolvesme.org.
Northwest Profile, Pages 35 on 03/23/2014