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Shelbyville didn't have a playroom for children with sensory needs. So, they built one.

Indianapolis Star - 9/20/2021

A steady stream of smiling children came through the doors at SENSES gym in Shelbyville on a recent Tuesday morning, and it wasn't hard to see why. It started with wanting to make a sensory play place for her grandson, who has autism spectrum disorder. Now this family serves hundreds of children in the community, with and without disabilities.

The play place, a sensory gym for kids of all abilities ages 6 and under, is a haven for a busy-minded preschooler. The main room features a bounce castle, play house and tactile wall covered in knobs, gears and gadgets to explore. There's a macaroni table for tinkering, tunnels for crawling and a ramp for climbing. Under the loft and slide sits a forest made of pool noodles. In the dark room, a large Lite Brite-like board and colorful tubes that sends colors swirling.

Holly Forville and her family founded SENSES, now located adjacent to the Golden Bear Preschool near State Road 44, around five years ago, after her daughter suggested they create a sensory gym for her son — Forville's grandson — who has autism spectrum disorder. They now serve hundreds of children from the community and Shelbyville schools each year.

It's not the first contribution the family has made to the Shelbyville — or Indiana — disabilities community.

At 86, Forville's father, Don Collins, has spent over half his life advocating for Hoosiers with disabilities, inspired by his daughter, Vickie, who was born in 1970 with Down syndrome.

Seeking to create better opportunities for his daughter, Collins joined The Arc of Shelby County, part of a statewide and national organization seeking to improve the quality of life of individuals with developmental or intellectual disabilities.

Together, Collins and his colleagues pushed to establish and grow the inclusion of special needs students in public schools. He was later The Arc of Indiana's board president from 1976-78 and has continued to work with the agency in some capacity ever since — most recently at SENSES gym, supported by The Arc's local chapter.

"He's a pioneer," Forville said. "Those years were knocking down the walls, and he had the sledgehammer."

Collins is one of thousands of Hoosiers who have contributed to building more inclusive communities over The Arc of Indiana's 65-year history.

Since its founding in 1956, The Arc of Indiana has empowered Hoosiers with disabilities to be self-sufficient, supported families and worked to create more inclusive statewide policies.

Conditions have changed drastically for disabled Hoosiers in that time — Indiana's last institution was shuttered in the mid-2000s, education and employment opportunities have increased and the Self-Advocates movement has given IDD Hoosiers a seat at the table alongside state policymakers.

In the more than 20 years since CEO Kim Dodson joined The Arc of Indiana, major strides have been made: newborn screening tests to allow early diagnosis and intervention; health benefit mandates and supported decision making, which gives individuals with disabilities more flexibility to make decisions for a self-directed, independent life.

"We are never satisfied with the status quo," Dodson said. "We are always going to push for more."

The Arc's local chapters grew in the early 1960s, after state legislators approved the use of a local property tax to fund community programs. By 1977, Glenda Hall, of Shelbyville, became the first person with a developmental disability appointed to The Arc's board.

It's a moment in the agency's history that continues to impact members. Established in 1990, Self-Advocates of Indiana is an organization led by and for people with intellectual and developmental disabilities.

"Now, when you look at a room talking about issues," Dodson said, "the people with disabilities are actually there, as well — which is exactly the way that it should be."

Shortly after Vickie Collins' birth, doctors alerted the family she may have Down syndrome. The family had previously adopted a daughter born with craniofacial differences, including a cleft palate and lip, so when they learned of Vickie's diagnosis, they were perhaps more emotionally prepared than other families, Collins said.

On the car ride home from the hospital, Collins remembers telling his wife: "Our life has just been altered, and we'll make it for the better."

If Collins and his wife were breaking down the walls, Vickie was right alongside them. She was a "prolific" reader, Collins said. She enjoyed poetry, movies and music, insistent upon listening to ABBA's "Dancing Queen" each morning as she made her bed. She was prompt — if they told her snack time was 10 a.m., she would be by their side within seconds if it wasn't served exactly at the top of the hour. Vickie was kind and positive and optimistic and fiercely loved her family, Forville said.

"She never had anything negative to say, ever," she said. "She was just a light."

Lessons from the early days of Collins' work with The Arc impact visitors to SENSES, perhaps without them even realizing it. Inclusion efforts in school have changed the experiences of students with disabilities, Forville said, and SENSES is introducing children to inclusive play long before they enter a classroom.

"If you start them at this age and someone may be in a wheelchair, kids don't see that (as different)," Forville said, "they're going to continue to include people with disabilities because they've been taught that from the very beginning."

Melody Cooper, a Self-Advocate specialist and the group's former president, said she never expected she'd travel around the state and meet others living with disabilities.

Growing up in Georgia, Cooper, who has cerebral palsy, felt like an outcast.

"I felt like nobody else knew what I was going through," Cooper said. "My teachers at school, my classmates, nobody knew who I was. And it took me a while to understand myself, to get to know, OK, there is a life."

At the suggestion of her aunt, Cooper moved from Georgia to Indianapolis in 1990. She worked at Meijer for over a decade, but she knew she wanted more.

In 2002, she took a class offered by The Arc called Partners in Policymaking that opened her eyes to the possibility that she may be able to use her experience to inspire change and serve others. Within about a decade, Cooper was president of Self-Advocates and working part-time at The Arc's downtown Indianapolis office.

Cooper, 52, has done almost all the things she never dreamed could be possible.

"(Self-Advocates) gave me the opportunity to know that I'm human," she said.

Shawn Fulton, the current Self-Advocates president, went from doing piece-rate labor in a sheltered workshop (these facilities employ individuals with disabilities, often paying below minimum wage) to working alongside state legislators.

The 48-year-old, originally from Marion, Indiana, was at the workshop for 20 years before moving to Indiana to work for The Arc about three years ago. He'd started attending Self-Advocates meetings in Marion around 2004, where he found his passion for advocacy: "They couldn't get me to shut up."

Fulton said Self-Advocates representatives sit on over a dozen statewide committees to ensure Hoosiers with disabilities are in the rooms where decisions are being made.

"We just sit on all sorts of boards to help people with disabilities to make sure that change is done right," he said, "and (it's) not harmful for people with disabilities."

At SENSES, the pandemonium of play continued.

A woman stuck her head into Forville's office, apologizing for the intrusion: "My child spilled the macaroni everywhere."

Forville was unfazed. No problem — all part of the learning and playing process.

Forville said she always saw the gym as her grandson's legacy, but SENSES is, in a way, Vickie's legacy, too. After all, without Vickie, Collins and his wife likely never would have done the work that changed all their lives.

"She was incredible," Forville said. "She was the best teacher we ever had."

Vickie died in 2008 after a lifelong battle with rheumatoid arthritis and recurring respiratory infections. As she got older, the arthritis had to have caused excruciating pain, Forville said, but Vickie was never bitter. The worst she would do was say she hated the ailment. Her favorite phrase: "I love this life."

Hoosiers have made progress over the last 50 years of his career, but Collins said the work is far from over.

"It's a struggle that will probably never end," Collins said.

When her father finally retires — for real this time — Forville said she looks forward to taking up the mantle, continuing to knock down obstacles, whatever they may be.

To learn more about The Arc of Indiana and how you can get involved, visit arcind.org.

For hours, location and more information about SENSES gym, visit sensesgym.org.

You can reach IndyStar reporter Holly Hays at holly.hays@indystar.com. Follow her on Twitter: @hollyvhays.

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