Last week, the Daily Mail WV reported on yet another bill in the West Virginia legislature that is already having the effect of driving young families to other states. House Bill 4723 would have placed applied behavior analysts into the West Virginia student loan forgiveness program.
An estimated 6,000 children are affected by autism in our state. This bill would have attracted the kind of professionals children like Ben Isaiah need.
Amanda Herbine moved to Richwood with her 5-year-old son, Benjamin Isaiah, in spring of last year from Hershey, Pennsylvania. In Pennsylvania, Ben received speech, occupational therapy, developmental and behavior health in-home services.
"We really took those services for granted," his mother explained.
According to Amanda, when her son was in any setting where there were more then four or five people, Benjamin would have a sensory overload; he would fall to the floor kicking and screaming.
The state of Pennsylvania assigned to Ben a therapeutic support staff worker for behavior health.
"She was so wonderful. She stayed with us 18 hours every week," his mother said. "She would do daily activities with Ben."
The worker even assisted the family in public settings, like grocery shopping or going to the playground, library, public pool or doctor appointments.
In Hershey, Benjamin also attended Gym Jam, a therapy center, where he received additional occupational and physical therapy in a full-size gymnasium setting.
"Our local YMCA also had a toddler therapeutic group, which encourages social interactions and the development of fine and gross-motor skills," she said.
When Amanda moved to West Virginia, she just assumed Benjamin's services would continue here. That wasn't the case.
"We came with his diagnosis, medical records, therapeutic recommendation and his IEP (individualized education program). We established him a pediatrician immediately, but as far as his therapeutic services, we were forced to drive several hours every week so he could attend. No in-home services, No Gym Jam services, no YMCA services."
So Amanda started do her own research. "I quickly realized the desperate need of these services in our area," she said.
Since Amanda had been attending all her son's therapeutic sessions with him for several years, she decided to take matters into her own hands.
"I immediately enrolled him as a homeschool student with Nicholas County, and set up a full therapeutic classroom in my home to help my son succeed and overcome the everyday challenges he faces living with autism."
Unfortunately, that doesn't help the other 6,000 children with autism in West Virginia, many of whom are not receiving services. So Amanda went from being a mother of an autistic child to an advocate for all autistic children.
"I decided to open Ben's Friends Charity, which is 5019(c)3 nonprofit autism and sensory store here in Richwood," she said.
The store recently relocated to Main Street across from Dr. Lloyd Adkins' office. The shop is chocked to the ceilings with low-tech, high-interest toys and products for all ages and abilities, including Melissa & Doug toys, train sets, bicycles, puzzles, games and art kits. Just no blinking, buzzing electronic devices.
"When shopping for my inventory," Amanda explained, "I go right for the educational, creative, therapeutic learning toys."
She set up the store by category: creative and craft, fine-motor skills, pretend play and life skills, therapeutic and sensory, gross-motor skills and problem solving.
Amanda also carries special items you will not find in a regular toy store to help get parents on the right track to help their child with autism succeed. These include sensory weighted stuffed animals, blankets and vests, language-building cards, sound reduction ear muffs, oversized special-needs car seats, and autism awareness apparel and accessories.
To me, a mother of five and grandmother of nine, it just looks like an amazing toy store.
Amanda attracts parents from all over the country who have learned about her store through the internet and mailings.
She would like to see a more accepting world for special needs kids, but instead of complaining, she's taken action with many community volunteer projects.
"We donate our proceeds to autism research, education services and local West Virginia families living with autism," she said. "When you purchase an item at Ben's Friends, you're just not receiving that item, you're donating to autism and the money stays here in West Virginia where we need it the most!"
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