Unlocking the potential of neurodiverse children so they can 'light up a room like fireflies in the night'

BY ROGER MOONEY

PALM HARBOR – Chase Benson is on the autism spectrum and has Down syndrome, a dual diagnosis that made it hard for his parents to find the educational setting that fit him best.

Yet, Chase, 12, fits in at Fireflies Academy, a K-12 private school in Palm Harbor for children with neurodiversities, autism, and related diagnoses.

During his first year, Chase became toilet trained. He speaks more and learned to speak more clearly. He can hold a brief conversation. He participates more in his education.

And he made a friend.

“A real friend who he looks forward to seeing,” said his mom, Kris.

Chase is friends with Nicky Stathoulopoulos, 10, who is on the spectrum. Nicky’s mom, Lisa, owns Fireflies Academy.

The school opened in October 2022 with just two students – Nicky and Chase. This year, it has eight. The students attend with the help of the Family Empowerment Scholarship for students with Unique Abilities. The scholarship is managed by Step Up For Students.

“I wouldn't be able to find the right school without (the scholarship) because Chase's needs are so high,” Kris said. “The schools that can support him, the cost is very high. I could not do a private school for Chase without this scholarship. I think it's amazing.”

Lisa opened Fireflies Academy at the suggestion of Dr. Jennifer Katzenstein, co-director of the Center for Behavioral Health; Pediatric Neuropsychologist at Johns Hopkins All Children’s Hospital in St. Petersburg.

Nicky was 8 when he began homeschooling. At the time, his cognitive ability tested as a 1-year-old. After one year, Dr. Katzenstein noticed his cognitive ability jumped to that of a 3-year-old.

“We see that sometimes, especially when maybe a child hasn't gotten the educational support that they need for a bit of time, and then all of a sudden we're clicking, we're getting them the educational support, the educational curriculum,” Dr. Katzenstein said. “The right setting makes such a difference.”

Lisa has a background working with children on the spectrum that began before Nicky was born. After moving to Palm Harbor in August 2017, Lisa and her husband, Nicholas, found themselves moving Nicky from school to school, looking for the right fit. That frustration led to Lisa homeschooling Nicky, and that led to his cognitive growth.

In one year, Nicky learned to read and form sentences. He learned to eat with utensils and learned the difference between foods he can eat with his hands and those that need a fork or a spoon. He improved his articulation, listening, visual, and tracking skills.

“I held him accountable,” Lisa said. “The sky is the limit for him. I'm one of those parents who believes that you have unlimited potential, and I'm going to hold you accountable, so you reach your highest potential.”

That philosophy is reflected in the name she chose for her school: Fireflies Academy.

“I believe that children with neurodiversities, in particular those with autism, if you can just tap into their potential, they can light up a room like fireflies in the night,” Lisa said.

Nicky’s cognitive ability improved from a 3-year-old to a 5-year-old during his first year at Fireflies Academy.

“Lisa is a powerhouse and someone who has become intensively engaged in educational curriculum and support for kids with special needs,” Dr. Katzenstein said. “She always has been, but even more so with Nicky because of her tenacity and her true passion for this, especially for educating kids with special needs.

“That is what always was so impressive for me, watching her be so incredible, and advocating for him and seeking support for him and thinking about education and creative ways to educate. And then to see Nicky make such great gains has always been impressive. But knowing her hard-working personality and her tenacity, we always joked around that she should start a school. And then, of course, what did she do? She did it.”

Lisa and Kris had crossed paths many times as they sought the right fit for their sons. So, Kris was the first parent Lisa contacted when she started Fireflies Academy.

“Take a chance on me,” she said to Kris.

Kris, who was equally as frustrated as Lisa was about not finding the right environment for Chase, said yes. She often felt Chase was an outcast or a burden at his previous schools because of his dual diagnosis.

“By the time we got there, I'd just about given up on Chase making any progress in school because he just doesn't engage, and nobody could get him to engage,” Kris said.

After the first month at Fireflies Academy, Kris said she knew her son was where he belonged. Chase was engaging with Lisa and the staff, and he was showing improvement in many areas.

“Lisa has a knack for hiring really high-quality teachers who have the patience and the energy for these kids who have high needs,” Kris said. “Lisa has delivered absolutely everything she promised. Chase is there, he's safe, he's loved. They're putting in the right supports and pulling them back at the right time to help him be more independent. His speech exploded. His self-care exploded.”

Talking and writing are two of Chase’s weaknesses. So, the lessons don’t require verbal or written answers, which would only frustrate Chase.

“They’ll take the lessons, and then they'll make index cards with clothes pins, so he can clip an answer or put a marker on the answer,” Kris said. “They modify it so that he doesn't have to be in his weaknesses. They adapt everything to set him up for success and then build from there.”

Chase talks about school when he gets home, which is something he never did before attending Fireflies Academy. He also talks about his friend, which is something he never had before meeting Nicky.

“Chase talks about Nicky all the time. They're the best of buddies,” Kris said. “They tease each other and joke around. They make eye contact. They communicate with each other, which is very, very unusual for kids on the spectrum.”

Lisa called Nicky a “bundle of joy.” He loves to draw, swim, play hockey, and walk the family’s dogs.

“There’s so much inside of him. There’s so much potential,” Lisa said.

She finds that disappointing when educators and even parents don’t see that in children with neurodiversities. That’s why she started Fireflies Academy.

“It’s OK. I get it,” she said. “Let me take over.”

Roger Mooney, manager, communications, can be reached at [email protected].