Families that have a child with autism may sometimes feel like they’re all alone, but at this Loves Park, Ill., space families find connections, resources and an incredible place for their kids to enjoy life just as they are.
When Jamie Lynn Dornink’s son Brody was diagnosed with autism in 2014, she began looking for ways to connect with other parents like her and her husband, Kirby.
“The thing about autism is that it’s everywhere, but it’s also nowhere,” she says. “I just wanted to sit with people. I didn’t want my husband and I to be by ourselves.”
When she didn’t find any support groups, Dornink decided to do something herself. “I couldn’t sit by and let other people go through this,” she says. “I thought, ‘I have to fix this.’”
Dornink, who works as a special education teacher, looked at the sensory gym in her home in Poplar Grove, Ill. She decided a similar setup needed to be available for other parents in the region whose children needed a place to feed their sensory systems with active play, but also withdraw somewhere quiet when they’re feeling overwhelmed or need a rest.
“I wanted to create a place where families and kids could just be themselves,” she says. “It needed to be somewhere where kids with autism could get the input they crave.”
In June 2016, Dornink applied for, and received, a 501(c)3 nonprofit certification for her new concept.
“I bought a book called ‘Nonprofits for Dummies,’” she says. “I recruited Brody’s awesome team of therapists and other knowledgeable people in the community to form a board of directors and we all got to work.”
Dornink’s work came to fruition on May 19, 2019, when the Superhero Center for Autism officially opened its doors. Located at 4205 Galleria Dr., in Loves Park, Ill., the center offers support, education and resources for families and individuals with autism and other special needs along with their families.
“A lot of parents who come to us are still in shock,” says Billy Kulpa, board president for the Superhero Center. “They’re 30 to 90 days out from getting their child’s autism diagnosis and they’re in crisis mode. We want to give them a positive first step on a lifelong journey.”
Autism spectrum disorder is a developmental disability that presents in different ways. People with autism may struggle with communication or interact and learn differently from others. Symptoms usually manifest before the age of 3 and there is no known cause or cure.
“Kids with autism tend to be in their own world a lot of the time,” says Matti Rivotto, volunteer director at the Superhero Center and a senior behavioral therapist at Caravel Autism Health in Rockford. “Things that are unexpected or not concrete can be very difficult for them to navigate.”
For someone with autism, who may struggle with socialization, gathering with a group who share a similar experience can be beneficial, Rivotto says.
“I see so many great experiences at the Superhero Center because the kids there see people who are like them,” she says. “There’s less pressure for them to follow the usual norms that come with interacting with people in everyday life.”
For some kids with autism, sensory experiences are something to seek out. A sensory-seeking child may feel the urge to run, jump and climb. For others, too much sensory input can be overwhelming, causing the child to withdraw from certain sounds, lights, smells, textures or hard-to-navigate social situations that cause stress.
“For children who are sensory avoidant, it can be almost painful to hear loud noises or to have to sustain eye contact for long periods of time,” says Rivotto. “For sensory-seeking kids, there is a need that is fulfilled by physical activity.”
At the Superhero Center there’s an open gym with a climbing apparatus, crash mats, swings and mini trampolines for sensory-seeking kids, while sensory-avoiding children can head into a quiet room or wear one of the pairs of noise-cancelling headphones that are available.
“We really want our kids to be able to express themselves when they visit,” says Rivotto.
Since the center opened, the response has been immediate and resounding.
“It’s growing like wildfire,” says Dornink, who also serves as board vice president. “So many families had been looking for a place, just like I was.”
Dornink says therapists and support workers from as far away as Madison, Wis., have recommended the center.
“I’ve even had it recommended to me when I call around looking for services,” she laughs. “I let them know that I’ve heard of it.”
Dornink points out that all of the center’s work is community driven and supported. There are no paid positions, only volunteers. The center has also never accepted funds from the city, state or federal government.
“We’ve never gotten a grant,” she says. “This is 100% a community project.”
One source of revenue for the Superhero Center is rentals. The facility can be rented out on Sundays to families who want to host a party. A birthday room is available for cake, ice cream and other refreshments.
According to Kulpa, close to 150 families are currently enrolled at the center. And the number is growing.
“We’ve basically been signing up a new family every day for the past three and half months,” he says.
Also growing is the number of children diagnosed with autism. According to the Centers for Disease Control’s Autism and Developmental Disabilities Monitoring Network, one in 36 children in the U.S. were identified as having autism in 2020. That’s up from one in 44 children in 2018 and one in 54 children in 2016. This growth means that places like the Superhero Center are going to become even more sought out by families in the future.
“We definitely want to grow,” says Kulpa. “We would love to have a lot more space, have a paid staff and be open every day. There’s a clear need.”
With more families being impacted by autism every year, Dornink stresses the importance of early intervention. If you suspect your child may have autism, as scary as it may be, getting an early diagnosis will help them receive the therapies and treatments they need.
“Do not ignore that gut feeling about your child,” she says. “That support means everything. The sooner you have access to it, the better off your child will be.”
Kulpa’s sons Grant and Jude have autism, and he reinforces the importance of parents having a support system of their own, something the Superhero Center is there to provide.
“We can’t offer medical advice, but we can be a place where families gather for comfort and to share resources and advice,” says Kulpa. “It’s so important that parents know they are not alone.”
In addition to offering a place to play, the Superhero Center also holds a wide variety of events for family members of children with autism. Mom nights, dad nights and sibling nights are held regularly and are advertised on the center’s Facebook page. An annual Superhero Sprint, a 5K run/walk, is currently in its sixth year and will be held in Belvidere’s Doty Park on April 29. The center also holds an annual Masquerade Ball fundraiser during the fall.
For Dornink, the more word spreads about the Superhero Center, the more families affected by autism will know there is a place that understands and supports them.
“The community needs this,” says Dornink. “We’re going to continue to do all that we can to help these kids and their families.”