By Janee Law
Steve Stone said his proudest moment of being the father of a child with Autism Spectrum Disorder was when his daughter, Olivia Jane Stone, learned how to ride a bike last year.
“When I let my hands go and she was finally on her own riding that bike, it was the proudest moment of my life,” said Stone, of Halesite, 51.
He continued, “That was probably the most backbreaking effort I ever endured in my life, but she got it. She and I created a certain amount of independence for her where now she can jump on her bike and I can jump on my bike, and we ride our bikes together, daddy and daughter. I treasure that.”
Since Olivia, 9, was diagnosed with ASD at age 2, Stone has been on a crusade to find her the best therapies and treatments. On this mission, Stone has also taken a significant role in educating and raising awareness in the community by starting up a Facebook page, “Olivia’s Journey,” in January. There, the father and daughter chronicle their daily triumphs and struggles.
“I want people to share my experience, which I’ll always look at as a positive no matter what,” Stone said. “She’s taught me more about myself probably more than I will ever be able to teach her.”
After seven years of research, Stone recently discovered Plainview-based Center for Integrative and Innovative Therapies, a center that specializes in extensive testing to research the underlying cause of each patient’s condition.
“It’s all functional medicine, nothing invasive, and it’s all about really the relationship between the gut and the brain,” Stone said. “It’s proper nutrition, as well as the right equipment that needs to be used in order for proper brain stimulation because that’s really where the spectrum disorder stems from, nutrients that are not being metabolically processed correctly going through the gut and up to the brain.”
After some extensive testing, Olivia recently started the nutrition phase of the therapy. She’s currently on an “elimination and addition diet,” which tries to balance what’s “going on inside her from a nutritional standpoint,” Stone said. This will go on for three weeks, he added, based on recommendations by CIIT.
Within the first week of changing Olivia’s dietary habits, Stone said he’s already seeing results.
“The biggest change is she’s not stimming as much as she used to,” he added. “Her attention span is much better. Not perfect. But I have seen an immediate jump in that.”
After that, Stone said, is the brain stimulation phase, which targets sight, sound and motion.
In the meantime, Stone continues to chronicle and share their story through social media, while staying active with Olivia throughout the week.
“I want people to share my experience, which I’ll always look at as a positive no matter what type of negatives happen because whatever negatives happen ends up turning into some type of positive for me,” Stone said. “She’s taught me more about myself probably more than I will ever be able to teach her.”
As a fourth grader in Flower Hill Primary School in Huntington, Olivia is enrolled in a 12-1-3 self-contained class. She receives speech therapy and occupational therapy. After school, Stone and Olivia spend time at public parks, where Olivia can typically be found on the merry-go-round, her favorite ride.
Her favorite day of the week is Sunday. She calls them “Sundays with daddy.” Olivia and Stone spend the entire day together from as early as 9 a.m. to get breakfast, and not returning home until hours later after activities like going to the park, or visiting the Long Island Children’s Museum or Long Island Aquarium in Riverhead.
“In order for her to be able to progress and be the best Olivia she can be, she has to be able to understand proper play, proper language and communication with other children,” otherwise she’ll have trouble making friends, Stone said. And “she’s not going to be able to progress to a level where she could potentially be self-sufficient at a much later age, and that’s a fear of mine.
With that, Stone added, with struggle comes triumph on their journey of unconditional love.
“It’s all about reaching certain milestones and I don’t care how long it takes as long as she reaches it,” he said. “Once she does reach it, the feeling I get is better than any feeling that a parent gets with their child because of the difficulty and patience that it took.”