AKRON, Ohio -- It’s a culture of isolation Jeff and Amy Belles of Akron are tired of living within.
Their 11-year-old son, Carson, has autism.
Instead of changing their son for the world, their desire is to change the world for their son.
“You don’t get invited to birthday parties. You don’t get invited to be a part of groups,” Jeff says. “We’ve lost friends, close friends, that their typical world we don’t fit into.”
Autism is a neurological disorder impacting brain function. It affects the development of communication and social interaction skills. It’s typically diagnosed within the first three years of life.
Carson was diagnosed at 18 months, and slowly lost the ability to speak.
“He was slipping away from me into a world that I didn’t know,” Amy says. “He had nine words and he regressed. The first few years of diagnosis I think I just wanted to find anything I could about autism and learn about it to help my son.”
The autism diagnosis wasn’t the only surprise to hit the family. Both Amy and Jeff lost their jobs and went three months without work.
Then, they lost their home.
The couple was able to endure the financial storm, find new jobs, a new house and a new outlook on life with Carson.
“I feel bad about the person I was,” Jeff says. “At the time you would do anything and you would jump through any hoop to fix him. There was no need to fix him.”
Amy echoed those sentiments.
“I’m not trying to change my son. He’s beautiful. I want to embrace who he is and what he is.”
Although the Belles learned how to accept their son, the couple soon realized the outside world wasn’t following their lead.
They found themselves facing rejection, exclusion and judgmental glares from bystanders due to Carson’s behavior in public.
“I’ve been in a store where Carson was melting down and pounding me on the back … and a lady said to me, ‘sir, sir, you should give him a good smack,’” Jeff says. “And I asked her (sarcastically) if it was a new cure for autism.”
The family was introduced to KultureCity, a national nonprofit with a mission to create a world where all individuals with autism and their families can be accepted and treated equally. The organization made such a strong difference in their lives, Jeff and Amy started a local chapter in September. Their kick-off was a spooktacular event at the Akron Zoo where special needs families could trick-or-treat in a safe and accepting environment.
“We need to help other families get to a point in their life where you can feel OK with this diagnosis,” Amy says.
It’s a message well-received, especially for Temara Collins-Ford. Her son, Avery, was diagnosed with autism just three weeks before the special needs spooktacular.
“This is Avery’s first event with being around other kids that are similar to him,” Collins-Ford says. “It means a lot. You have to be a strong person to deal with a diagnosis of any type.”
Amy and Jeff are currently participating in KultureCity’s national autism acceptance movement “Love Without Words.” It's designed to showcase nonverbal ways to display love.
Carson stars in an autism acceptance video for non-verbal individuals while Amy is featured on the organization’s Web site showing how she displays #LoveWithoutWords.
Multiple celebrities are involved in the movement, including former NFL stars Tiki and Ronde Barber and reality television personality Nicole “Snooki” Polizzi.
Back here at home, Amy and Jeff are working with KulureCity to train staff at public venues on how to properly engage individuals with autism and other special needs. They’re also working to transform these outlets into sensory-friendly spaces where autistic individuals are not overwhelmed with lights, sound and other stimuli.
“We want other families like us to get out and to feel comfortable,” Amy says. “We don’t want to feel isolated by this diagnosis.”
The Belles are also creating an online community through their KultureCity Ohio Facebook page. Their next event is a sensory-friendly holiday concert at Copley High School.
(© 2017 WKYC)