There is no amount of online research that can prepare someone to parent a child with autism. There’s no formula, manual or one-size-fits-all approach, because every person diagnosed with autism is different. But for the parents who live this journey, on the fly, there’s beauty and perspective to pull from every single day.
For Blue Cross Blue Shield of Michigan employee Brianna Neace and her husband, Charlie, that beautiful journey started about 5.5 years ago, when their son, Kieran, was diagnosed with autism.
“His development was right on track where it was supposed to be until he was 8 or 9 months old,” recalled Brianna, a communications project planner at BCBSM. “He had started saying words here and there, which was really great, and then after a couple months or so we started seeing some reversion as far as his language was concerned.”
Brianna noticed that when the family talked to Kieran, he wouldn’t always pay attention to them. When they’d call his name, he didn’t always look at them. They were worried about what they perceived to be developmental delays in Kieran, most of which appeared to be communication-based.
“His favorite movie was ‘Home.’ Once he heard the opening credits he’d come running from the other room. It was like, ‘OK, maybe he just doesn’t want to talk to us,” Brianna said, with a laugh. “He wants to do what he wants to do, maybe. Selective hearing, like some adults.”
The Neaces were concerned enough to start scheduling appointments with specialists, under the guidance of their pediatrician. Kieran saw a hearing specialist, a neurologist, and eventually, after the family sat on a waiting list for more than six months, an autism evaluation team of five doctors.
About a month after that evaluation, Brianna and Charlie learned of Kieran’s autism diagnosis.
“The diagnosis itself wasn’t super optimistic,” Brianna said. “They had basically told us that Kieran would never be in a regular classroom. That he wouldn’t be interacting with peers his age. That he likely would never talk.”
Hearing that her child may potentially have a more difficult time developing was hard to process, Neace said. But at least the diagnosis brought clarity to the family, and they were granted the ability to move forward.
“Following that diagnosis, it was really about figuring out what those next steps looked like,” Brianna said. “It was getting him into more regular speech therapy and occupational therapy routines, as well as exploring what Applied Behavioral Analysis therapy may look like for him.”
Applied Behavioral Analysis (ABA) therapy is based on the science of learning and behavior. After vetting multiple ABA centers, Kieran was enrolled and put on a waiting list before finally receiving therapy sessions. She said the results have been tremendous.
“When I think about what we were told in that initial diagnosis appointment, the fact that he would likely not speak, that he would not be in a regular classroom, that he would not interact with kids his own age, when I think about that versus the development that we’ve seen over the past five years, it’s just tremendous. He has grown by absolute leaps and bounds.”
Brianna and Charlie look back now with pride; they went from hearing their son would never talk, to living with a son that never stops talking.
“There are new words coming out of his mouth all the time, every day, sometimes words we don’t want to hear him say. It’s just, heartwarming,” she said. “It’s just beautiful in the best way possible when you can see your kids defying those odds.”
Kieran’s routine speech, occupational and ABA therapy has him in a first-grade, gen-ed classroom today, where he does in fact interact with kids that are his own age. He’s doing the same schoolwork that kids his age are doing.
“He’s still on track, he’s on par with all of these other kids, which is something we were told not to expect,” she said.
Charlie said the diagnosis was tough to process, but the family – including their second child and oldest son, Christian – have leaned on each other through every step of what can be a challenging day to day process. Between Kieran’s school and various therapy sessions, Christian’s school and extracurricular activities, and Brianna and Charlie’s own respective work-life balances, everyday life in the Neace household can be a juggling act. But as they’ve done for close to six years now, Brianna and Charlie find beauty in the process and beauty in the journey.
“It’s absolutely amazing how Kieran has turned out so far,” Charlie said. “I think we’ve kind of been blessed and lucky with that. He kind of makes it easy for us, to be honest… he’s defied all those odds and he’s made it easy for us to be parents for him.”
Photo credit: Brianna Neace
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