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From jumping rope to riding bikes, education savings accounts help those with autism expand their world

BY ROGER MOONEY

SARASOTA – Sophia Slaughter, who is 15, recently learned to jump rope.

Maybe that is not a big deal to someone who was skipping Double Dutch at 5, but it is to Sophia, who is on the autism spectrum and has dyspraxia. Known as developmental co-ordination disorder, dyspraxia hinders her coordination. Some activities that neurotypical teenagers consider routine are nearly impossible for her.

Or were.

While working with trainer Dani Williams at NXT Generation Wellness in Sarasota for the past two years, Sophia gradually gained command of her muscles and their movements. She can hold a yoga pose and coordinate her footwork to move through a series of squares taped on the floor at NXT Generation.

Sophia Slaughter jumps rope during a recent training sessions at NXT Generation Wellness.

And she can complete in proper order the mini skills that allow her to jump rope.

“It’s life-changing,” said Sophia’s mom, Jennifer Slaughter.

Sophia, who lives in Sarasota and is home schooled, receives the Family Empowerment Scholarship for students with unique abilities (formerly the Gardiner Scholarship). It is managed by Step Up For Students. Sophia uses her education savings account that comes with the scholarship to pay for the sessions at NXT Generation, as well as for yoga classes and ballroom dancing.

These activities added health and fitness to Sophia’s life, helped her become more socially interactive, and gain a circle of friends.

“That’s the ultimate goal,” Williams said. “Elevate and enhance their current life, or what they view as their current life, and open doors and continue on this path.”

In early August, 20-year-old Riley Joyce for the first time in his life rode a two-wheel bicycle without any assistance. His mom, Judi, who watched from the driveway of their Sarasota-home cried.

“It was the best thing ever to see,” Judi said.

Like Sophia, Riley is on the autism spectrum. He lives in Sarasota and is home schooled. Riley also receives the Family Empowerment Scholarship (formerly Gardiner) and uses his education savings account for yoga, ballroom dancing and sessions with Williams.

Riley was introduced to Williams three years ago during her Saturday group classes, which are sponsored by Face Autism. For the past two years, Riley has taken weekly one-on-one classes with Williams.

Jordan Soriano and NXT Generation Wellness owner Dani Williams.

Started by Colleen Buccieri, whose godson Jordan Soriano is on the spectrum, Face Autism is a nonprofit that organizes autism-appropriate activities such as bowling, horseback riding, and golf. It also sponsors a ballroom dancing class at Dynasty Dance Club in Sarasota.

Judi enrolled Riley in the fitness class, hoping he would get healthier and make friends. Check and check.

Riley has lost 33 pounds since he began working with Williams. At first, he could barely manage five minutes on the treadmill. Now he can walk and run for 30 minutes, increasing the pace as he goes along.

“His endurance has gone off the charts,” Judi said.

As for socializing, Riley chats with everyone he encounters, making friends wherever he goes.

“He doesn’t stop talking, which is great,” Judi said. “I love it.”

In July, Riley spent a week in the Adirondack Mountains of New York with a small group of friends who are on the spectrum. They hiked, went fly fishing, ziplining, and kayaking.

The outing was the idea of Williams’ boyfriend, Chase Pettey, who runs Adventure For All, a nonprofit that creates interactive adventures for those with intellectual and/or developmental exceptionalities.

Riley tried to ride a two-wheel bike during the trip and came close. He finally conquered that feat not long after returning home.

Williams helped Riley master the bicycle (which Riley purchased with his education saving account) with a series of exercises over a six-month period that improved his balance and stability.

“The confidence in Riley has just skyrocketed,” Williams said. “He’s much more willing to try new things, so that’s been a wonderful thing to witness.”

As Jordan’s godmother, Colleen was keenly aware of how children on the spectrum grow up without friends. They aren’t invited to birthday parties or asked to go to the movies. She created Face Autism in 2009 to change that.

“I just look for different opportunities for kids to be involved in, things that typical kids would be involved in,” she said. “And I’m a big proponent of getting them off the video games and the computers. A lot of the kids don’t have fitness in their life. I think it’s very important – have a healthy heart, a strong body. Most of them don’t have upper body strength.”

Jordan, 21, lacked upper body strength when he began training with Williams four years ago. He couldn’t jump rope. He could ride a two-wheel bike, but he couldn’t peddle with much power.

A recipient of the Family Empowerment (formerly Gardiner) Scholarship, Jordan, who is homeschooled, used his education savings account to pay for his training sessions with Williams.

Jordan can jump rope. He can vertically jump 36 inches. He has learned to stand when he rides his bike so he can generate more power when he peddles. He runs 35 minutes around his home in Ellenton, Florida every other day. He is making plans to bring his bicycle to Riley’s house, so they can ride their bikes together.

Jordan, who excels at ballroom dancing, was part of the group that made the trip to the Adirondacks.

“This has given him confidence to try new things and to challenge himself,” Colleen said.

And to keep trying. During the Adirondack trip, Jordan tried to complete an obstacle course on his bike. He was unsuccessful the first time, and he was unsuccessful the second time. He didn’t quit, though, and eventually he completed the course.

“He has really shown determination,” Colleen said, “something he never had.”

That’s all part of the plan Williams has for each of her clients. Knowing no two have the same challenges, she devises individual programs for each. “Outside the box” training, she called it. Williams developed a book where they can chart their progress during workouts and encourages them to write in a journal. She teaches them about proper nutrition and the importance of staying hydrated.

Williams, who graduated from Saint Francis University (Loretto, Pennsylvania) in 2011 with a dual degree in Elementary and Special Education, works as a learning support teacher at Community Day School in Sarasota.

In 2012, Williams began Kids in Motion, which morphed into the wellness program that is now NXT Generation.

“Watching the underdogs take on things we’ve preconceived them unable to do or limited what they could actually do and see them be able to do it with the correct support and guidance is one of my greatest joys in life, hands down,” Williams said.

Her goal is to push clients with special needs through the glass ceiling society has placed above them, to show the impossible is possible.

Like jumping rope for Sophia Slaughter.

Roger Mooney, manager, communications, can be reached at rmooney@sufs.org.

Tripping the light fantastic while building confidence in the ballroom

Gardiner students learn to tango and much more

By ROGER MOONEY

SARASOTA, Florida – Sarah Parkerson has her left hand on Jordan Soriano’s shoulder. Jordan’s right hand rests on the small of his partner’s back. Their other hands are entwined as they move across the dance floor.

Sometimes it’s a waltz. One, two, three. One, two, three.

Other times, a tango. Slow, Slow. Quick, quick, slow.  

Or the foxtrot. Slow, slow, quick, quick. Slow, slow, quick, quick.

But for Sarah, it doesn’t matter which dance they are doing, or if 100 people are looking on. She is in her own world. She is moved by the music and follows Jordan’s lead.

“I really feel like I don’t see the people (watching),” she said. “It’s just me, my partner, the music. It’s just really amazing.”

Sarah, 15, and Jordan, 20, are both on the autism spectrum. Both receive the Gardiner Scholarship for students with certain special needs, managed by Step Up For Students.

Sarah, who lives in Sarasota, and Jordan, who lives in nearby Ellenton, train at Dynasty Dance Club in Sarasota under Sarah Lototskyy.

Jordan Soriano and Sarah Parkerson are two of the Gardiner students participating in Dynasty Dance Club’s Dynasty Stars program.

Sarah and Jordan met there two years ago when she joined the studio’s Dynasty Stars program after moving from Alabama with her mom. Though she danced at a ballet studio in Alabama, Sarah arrived at the new dance club as a shy teenager with little confidence. Her mother, Cathy Parkerson, said Sarah kept to herself, standing with her hands clasped and her head down while avoiding eye contact.

Now Sarah is poised and smiles as she looks into her dance partner’s eyes. The progress has surprised even Sarah.

“Before I was very unconfident. I didn’t really move much at all,” she said. “Once I started dancing, I felt better. I felt happier. I had more confidence.”

When asked what she likes most about ballroom dancing, Sarah thought for a few moments, then answered, “Basically everything.”

The Stars are born

Dynasty Stars was born in January 2016 when Lototskyy noticed the brother of one of her students bopping to the music while he watched his sister dance. The boy’s name is Michael, and he has Down syndrome. Lototskyy asked Michael if he wanted to dance. He said yes, and they danced for 10 minutes.

Lototskyy decided to start a program for those with special needs. The first class consisted of a man with autism, a young girl with epilepsy and Michael.

Soon after, Colleen Buccieri, who runs the nonprofit Face Autism and is Jordan Soriano’s godmother and caregiver, learned of the new program. Buccieri told Lototskyy she would bring some children who are on the spectrum to the next class.

By the end of the first month, Dynasty Stars had 20 students. It has grown steadily ever since. Through her Dynasty Dance Club Studios in Sarasota, Venice and Lakewood Ranch (she will soon open a studio in St. Petersburg) and the schools where she teaches, Lototskyy estimates she teaches 150 special needs dancers, ranging in age from 3 to 54.

Nine students attend the Dynasty Stars class that meets in Sarasota on Tuesdays and Fridays. Five of those dancers, including Sarah and Jordan, receive the Gardiner Scholarship. The scholarship does cover the dance lessons. For Sarah and Jordan, the dance instructions are covered through Gardiner to help them with music education, socialization and memory skills.

“What’s been so great about Gardiner is students have been able to explore this side of themselves,” Lototskyy said. “With all of the therapies, it’s nice for them to have a mentally and physically stimulating activity to do.”

Why can’t they?

Jordan was 9 when Buccieri started Face Autism to provide sensory friendly activities, support groups and more for children on the spectrum and their families. As Jordan’s godmother, Buccieri watched him grow up without going to the movies or the mall or to children’s birthday parties. She formed the nonprofit and with the help of volunteers, organized autism-appropriate activities and classes, asking questions that always began with the same three words: “Why can’t they …?

Why can’t they go fishing?

Why can’t they go golfing?

Why can’t they go horseback riding?

As soon as she learned of Lototskyy’s new dance class, Buccieri asked, “Why can’t they go ballroom dancing?”

Lototskyy has been teaching dance for 12 years. She said anyone can learn. Jordan, who was in the first group that Buccieri brought to the new class, is proving his teacher right.

“He was all left feet,” Buccieri said. “Unfocused. He was a mess. And now he’s really, really good and he loves it. He feels it’s something that he himself has accomplished.”

Jordan is progressing though the levels of ballroom dancing. He has shelves in his home filled with more than 25 trophies earned at dance competitions.

“I love to dance, because it’s fun and it’s challenging, and I get to see my friends,” he said.

The many trophies Jordan has won for ballroom dancing.

Like Sarah Parkerson, Jordan was shy and avoided eye contact when he first walked through the doors of the dance studio. But that changed. It had to. Ballroom dancing requires the male to escort his partner to the dance floor, to look into her eyes and lead her through the steps.

“The main thing is the confidence to get out there on a big ballroom floor, and they can really overcome their sensitivities, because you have the bright lights, the loud music. You have the crowd. They’re out on that big ballroom floor, looking into the eyes of a hundred or more spectators just staring at them,” Buccieri said. “It’s sometimes a little overwhelming, but they seem to get into that music and that all goes away.”

At the beginning, Buccieri thought dancing would be like any other activity sponsored by Face Autism. She hoped the kids could dance for an hour a week, get some exercise, maybe make a friend or two and go home. Never did she dream Jordan and the others in the program would develop into competitive ballroom dancers with their own routines and trophies earned around the Southeast.  

“I never thought Sarah would take it to the level she has,” Buccieri said. “Now she’s well-known in the dance world for her special needs program. There’s nothing like it around.”

Take a bow

Lototskyy, who owns her dance studios with her husband, Maks, has been dancing for 27 years. She thought of becoming a special education teacher while in high school before her dancing career took off. She said teaching the Dynasty Stars students is her favorite class of the week.

Recently, Lototskyy sat with a visitor to a Dynasty Stars class.

“Do you know how to do any of these things?” she asked, motioning to the students who were dancing a salsa.

One, two, three. (Pause.) Five, six, seven. (Pause.)

The answer was no.

“So,” she said, “you can imagine how difficult it is to just (learn one move) with everything else they are facing. So, the fact that they can go out there and perform at a high level and pick music, that gives them confidence.”

Sarah and Jordan practice with dance coach Sarah Lototskyy at the Dynasty Dance Club in Sarasota.

Confidence is the word used most often when talking about the benefits of ballroom dancing to someone on the spectrum.

Cathy Parkerson, Sarah’s mom, said her daughter receives that and more.

“So much more,” she said. “The interaction is amazing because there are so many skills they are doing. Socially, they have to listen with other people, interact, work with a partner. They have to think, ‘What does my partner need from me? What do I have to do?’ Thinking of someone else is a really good skill, especially for someone with autism. They are kind of sometimes in their own world.”

Being in their own world is what ballroom dancing provides. Each dance has its own personality, Lototskyy said. The tango is passionate, dramatic, aggressive. The foxtrot is sassy and playful.

“The waltz is more elegant and more dreamy, more like Prince Charming and Cinderella,” she said. “They get to feel that way even if when they leave here, they have seizures and take so many medications that they don’t feel like Cinderella or Prince Charming. But they do when they’re here.”

Roger Mooney, marketing communications manager, can be reached at rmooney@sufs.org.

How an education savings account turned a child’s room into a ‘destination’

Editor’s Note: This post originally ran April 1, 2021 on the redefinED blog, which is hosted by Step Up For Students. This is the fourth in a series of stories exploring the Gardiner Scholarship Program.

By ROGER MOONEY

Roman Scott’s bedroom has two walls painted orange and two painted blue. On the floor is a rug with the design of a two-lane road wending its way through a small town.

A train set sits on the rug, because Roman, 4, loves trains. And there is a stack of trays that hold his toys and musical instruments, because Roman loves to, as his mom says, “rock out” on his tambourine, cymbals and triangle.

Urrikka Woods-Scott refers to this as a “sensory room” for her son, who is on the autism spectrum.

“The goal was to get him to engage in his room, love his room by having all the support in that room,” she said.

Roman sits at the desk in his bedroom/sensory room.

Roman receives the Gardiner Scholarship for children with special needs. (The scholarship is managed by Step Up For Students, which hosts this blog.) Many of the items in Roman’s room, including the educational toys from Melissa & Doug and the stack of books from the Frog and Toad series, were purchased with funds from the Gardiner’s education savings account. These flexible spending accounts allow parents to use their children’s education dollars for a variety of educational purposes.

The scholarship also pays for Roman’s therapy at Bloom Behavioral Solutions, which is near their home in Jacksonville, Florida.

Woods-Scott got the idea to turn Roman’s bedroom into a sensory room from Bloom. She learned what Roman gravitates to in Bloom’s sensory room and did her best to replicate those items at home.

“We’re trying to transition (him) from sleeping in my bed to sleeping in his own bedroom,” Woods-Scott said. “I want him to have what he needs to be comfortable in his own room. My thought was to make his room a destination.”

Woods-Scott’s husband, Romain, suggested the colors for the walls. Orange and blue are two of Roman’s favorites. Blue is considered soothing and is a popular choice for sensory rooms. Woods-Scott added brown curtains to give the room more life.

The results, she said, are beyond encouraging.

Woods-Scott said Roman has made great strides since joining the Gardiner program in 2020. Much of that comes from his time at Bloom, which he attends for 30 hours a week. The rest comes from the tools available at home that Woods-Scott purchased through MyScholarShop, Step Up For Student’s online catalog of pre-approved educational products.

Families also can purchase items or services that are not on the pre-approved list. They must submit a pre-authorization request that includes supporting documentation and an explanation of how the purchase will meet the individual educational needs of the student. 

A review is then conducted by an internal committee, which includes a special needs educator, to determine if the item or service is allowable under the program’s expenditure categories and spending caps, and a notification is sent to the parent. The item or service may then be submitted on a reimbursement request that must match the corresponding pre-authorization.

Step Up For Students employs numerous measures to protect against fraud and theft, such as ensuring a service provider’s reimbursement request and a parental approval came from different IP addresses.

Woods-Scott purchased an iPad on MyScholarShop, which Roman uses for speech, math and preschool prep. She buys arts and craft supplies because they help Roman improve his fine motor skills.

Roman was diagnosed in October 2019. The family was living in Charlotte, North Carolina at the time. That November, Woods-Scott changed jobs and the family moved to Jacksonville, where, unbeknownst to her, Roman was eligible for the Gardiner Scholarship, the largest education savings account program in the nation.

The walls of Roman’s bedroom are painted blue and orange to help create a sensory room.

At the time, Roman was a “scripter,” which meant his speech was limited to repeating what he heard on a television show or a movie.

“It wasn’t a functional type of speech and he wasn’t expressing what he needed,” Woods-Scott said. “He wasn’t saying, ‘Mom, I want a banana,’ or something like that. He was only saying what he heard on a show. Now he says ‘mommy’ and ‘daddy.’ He tells you what he wants.”

Roman can count to 100 and recite the alphabet. He can read his Frog and Toad books out loud.

Next year, Woods-Scott would like to use her Gardiner funds to send Roman to the Jericho School of Autism in Jacksonville.

After having what she called “my little moment of crying” when Roman was diagnosed with autism, Woods-Scott went to work seeking therapy for her son and advocating for those on the spectrum. She started Mocha Mama on FIRE, a YouTube vlog that promotes autism awareness in the Black community.

And, she has started the nonprofit Shades of Autism Parent Network to focus on multicultural parents of children on the spectrum and create recreational experiences through travel.

Woods-Scott knows how fortuitous it was to land the job in Florida, and what that meant for Roman.

“It was definitely all for a purpose,” she said.

Roger Mooney, marketing communications manager, can be reached at rmooney@sufs.org.

How an education savings account is helping a Gardiner scholar see the world – virtually

Editor’s Note: This post originally ran March 18, 2021 on the redefinED blog, which is hosted by Step Up For Students. This is the second in a series of stories exploring the Gardiner Scholarship Program.

By ROGER MOONEY

Danielle Drummond was skeptical when she first saw the virtual reality headsets and consoles, and even the large-screen TVs, that are available to families who receive Florida’s Gardiner Scholarship for students with special needs.

“At first, I even wondered, ‘What on earth is the educational value of this?’” said Drummond, who lives in Fort Lauderdale.

It was 2018 and Drummond’s son Tristan, who is on the autism spectrum and is homeschooled, had recently undergone back surgery to correct a tethered spinal cord, which he had since birth. Drummond hoped Tristan, 6 at the time, could relearn to walk with the help of virtual reality.

Virtual reality has been used since the mid-1990s to help people on the spectrum learn to communicate and connect with others. Adults can use the technology to prepare for job interviews. Children use it to improve cognitive and gross motor skills.

Tristan has increased his attention span, improved his hand-eye coordination and developed his core strength through virtual reality.

Drummond believed the VR equipment could do the same for her son. She purchased the equipment with funds from Gardiner’s education savings account (ESA) through MyScholarShop, Step Up For Students’ online catalog of pre-approved educational products. It includes curriculum materials, digital devices, and education software.

Families can also purchase items or services that are not on the pre-approved list. They must submit a pre-authorization request that includes supporting documentation and an explanation of how the purchase will meet the individual educational needs of the student.

A review is then conducted by an internal committee, which includes a special needs educator, to determine if the item or service is allowable under the program’s expenditure categories and spending caps, and a notification is sent to the parent. The item or service may then be submitted on a reimbursement request, and it must match the corresponding pre-authorization.

Step Up For Students employs numerous measures to protect against fraud and theft. For example, if a service provider’s reimbursement request is submitted from an IP address and the platform sees that the parental approval came from the same IP address, the anti-fraud staff is alerted to investigate.

Thanks to the VR equipment made possible by the ESA, Tristan, now 8, did relearn to walk. But that was just the beginning.

“Then we discovered it had a lot more value,” Drummond said.

VR is also helpful during Tristan’s occupational and physical therapy sessions.

Since he began using virtual reality, Tristan has increased his attention span, improved his hand-eye coordination, and developed his core strength. He has learned how to interact socially, how to count and how to exercise.

Tristan cannot go on field trips like other students. He can’t even sit in a movie theater.

However, through virtual reality, Tristan has visited Walt Disney World’s Epcot Center and the Smithsonian Institute in Washington, D.C. He landed on the moon with Apollo 11, and went scuba diving through the Great Barrier Reef in Australia, where he swam with sharks.

“It’s enriched his life in ways that we would have been otherwise unable to do,” Drummond said.

Tristan also uses VR for his occupational and physical therapy. Drummond said it used to be a chore to get Tristan to participate in therapy.

“We would lose 75% to 80% of therapy lessons trying to get him into a groove to enjoy what he is doing,” she said. “It’s a struggle every parent with a child like Tristan knows.”

But with virtual reality now part of the sessions, Drummond said it only takes Tristan a few minutes to get into the therapy groove.

“So, we’re now getting full therapy sessions and because of that, he’s talking more, he’s interacting with us more. He’s actually becoming more social,” she said. “It’s gotten him into being healthier, because he has the ability to do physical therapy, which is absolutely his favorite thing to do.”

The technology also helps Tristan overcome his fear of visiting a place for the first time, like a medical facility. He can tour the facility virtually ahead of time.

“But now with the virtual reality, I can set him up on that, have the exact place we are going on it, and allow him to look around in a safe environment,” Drummond said. “That way when he finally goes, I don’t have to make plans for our arrival like an army general. I don’t have to have 500 contingency plans because he’s expecting it. He knows what it’s going to sound like. What it’s going to look like. He’s going to know where things are. All these things help him get acclimated and actually get more out of going to these places.”

Drummond never thought that Job Simulator on Oculus Quest, or the Ring Fit Adventure game for Nintendo Switch, or Beat Saber would improve Tristan’s life in so many ways, but they have.

“They’re a lot of fun, but it’s also a way to sneak education into him,” Drummond said. “I don’t know if I can really say it enough about it. It just helps him to do pretty much everything. He has a blast with it.”

Roger Mooney, communications manager, marketing, can be reached at rmooney@sufs.org.

Putting the ‘personal’ in training for those on the autism spectrum

By ROGER MOONEY

Reid Stakelum was tired when he entered Equally Fit in Tampa in the afternoon, a result, his mom said, of staying up a little too late the night before to watch the movie “Back to the Future” at a local drive-in theater with his family.

Fatigue can be a trigger for Reid, 17, who is on the autism spectrum and receives the Gardiner Scholarship managed by Step Up For Students. It puts “more stress on his body and his brain,” said Reid’s mom, Brittany. Add an hour’s worth of exercise, and Brittany was expecting an unproductive session for her son at the gym.

Reid Stakelum rides an exercise bike while trainer Mark Fleming watches. Both are on the autism spectrum.

She based that on experience. Reid had been a member at other gyms, and the trainers there, when facing a less-than-energetic Reid, often pushed him to work harder to shake off the lethargy. That method might work for some, but Brittany knows it does not work with her son.

But Mark Fleming, 32, who owns Equally Fit (formerly Puzzle Piece Fitness), is also on the spectrum. He understands Reid.

When Fleming realized Reid wasn’t physically ready for his typical Thursday afternoon workout, he made adjustments on the fly. Fleming eliminated some of the planned exercises, added more rest and recovery time and increased the weight or the repetitions of others. What had the potential to be a lost afternoon at the gym turned out to be a productive session.

“Mark totally gets it,” Brittany said. “He is totally self-aware. He was able to relate to Reid and get him to calm down. Mark made sure it ended with a positive, where in other gyms, it would have been, ‘Nope, you got to do it,’ and that doesn’t work for people with autism.”

Bringing back the ‘personal’ trainer

Fleming, who was raised in Tampa and attended private schools, has a bachelor’s degree in exercise science and a master’s in human performance from the University of Alabama. 

It was a natural progression from a youth spent playing sports, mostly basketball and football.

His first love was baseball. Family lore has it, Fleming could read a baseball box score before he could read a book. But his passion for the sport went away when a lack of hand-eye coordination prevented him from hitting a baseball. He moved on to basketball, but again encountered difficulty, because, he said, “my hands didn’t work the way they need to.”

“I had very limited physical skills,” he said. “But due to my fascination with sports, I was able to be determined enough to overcome those issues.”

In high school, Fleming played linebacker on the Cambridge Christian School’s football team despite weighing 145 pounds.

Fleming began working with a physical trainer when he was in middle school. “Traditional weight room stuff,” he said, with the emphasis on weight training.

“I greatly benefited from it,” he said, “because I gained confidence.”

But, he added, “Toward my junior year, I started to accept that I can’t do sports. What am I going to do? It took me a while to find exercise science. That parallel interest really helped me.”

Mark Fleming has a bachelor’s degree in exercise science and a master’s in human performance from the University of Alabama.

While in graduate school, Fleming said he started working in applied behavioral analysis as a behavioral assistant. He also became a volunteer coach for the Special Olympics.

He worked with children with autism in a school setting and saw those with fine motor and gross motor deficiencies go through occupational and physical therapy. On weekends, he saw the same deficiencies with the adults he coached at Special Olympics.

Many people on the spectrum have low muscle tone that can be improved with therapy but not corrected. It returns when they stop physical and occupational therapy.

Fleming learned there were few if any opportunities for these adults to stay active after they completed occupational and physical therapies.

Fleming had an idea. Already certified as a physical trainer, he decided he would work with those on the spectrum. But instead of emphasizing weight training, he would emphasize basic movements as a means of getting his clients physically active.

There is often stimming behavior – hand-flapping, rocking – but that is not exercise.

“When we’re dealing with autism, specifically, we’re dealing with a lot of sedentary behavior,” Fleming said. “Exercise helps pull kids out of that a little bit.

“A lot of these kids have gross and fine motor issues that need to be worked on. Those are where the starting points are. Let’s get these basic movement patterns down first and then we’ll get into the more complex as we go along.”

Fleming spent his first year as a physical trainer loading hurdles, resistance bands, sandbag style weights, soft medicine balls and steppers in his Honda Accord and driving to his clients, who were fanned out across the Tampa Bay area.

New client fills out a questionnaire, so Fleming can learn their objectives and their triggers. Are they sensitive to the florescent lights? He’ll turn them off. Noise? He’ll slow down an exercise if he hears a loud truck outside. Does their medication raise their body temperature when they are active? If so, Fleming will make the gym cooler during their session.

“You have to bring personal back into personal training,” Fleming said.

Bonding over Phineas and Ferb

Diane Carothers had taken her son, Mikey, to gyms that had classes designed for children. But those gyms played loud music and the lights were too bright. The trainers were loud and a little too enthusiastic for Mikey, who also used a Gardiner Scholarship through Step Up.

“I don’t think they would understand him,” Diane said.

 She learned of Fleming’s gym through a Facebook group for mothers who home-school special needs children. Like Reid Stakelum, Mikey, 13, is on the spectrum. And like Brittany Stakelum, Diane spent her first visit at Equally Fit filling out the questionnaire and answering questions about Mikey.

Diane said she immediately knew this was the gym for Mikey. The question was: Would Mikey feel the same way? The answer is yes, though it took a few visits.

Mikey and Fleming formed a bond over their shared interest in the video game Roblox and the animated TV series Phineas and Ferb. They discuss those two while Mikey rides an exercise bicycle, lifts his feet over small hurdles, lifts the sandbag style weights and performs squats and lunges.

Mikey has coordination issues. He will slouch if sitting too long. This sometimes causes him to fall out of a chair. But after attending twice-weekly classes for the past year, Diane said Mikey’s coordination has improved and he has more strength in his hands and core.

“It’s been great for my son,” Diane said. “I’ve tried to get him involved in sports, but he doesn’t do well in team sports, and he’s just not very coordinated. Having a personal trainer is great for him, and I think that might not be the case if it was just any personal trainer, but Mark is so good with him. He’s so patient and he’s low-key and he understands him. Mikey is just so comfortable with him.”

So comfortable that Mikey walks on the treadmill at home.

“The only reason he’s willing to do that is Mark encouraged him to do that,” Diane said. “He looks up to Mark as an authority on the subject whereas Mom is not.”

Equally Fit is located 40 minutes from the Carothers’ home in Port Richey. Toss in a 60-minute session to the nearly 90-minute roundtrip commute and that is quite a commitment to make twice a week.

“I do it because it’s really beneficial for Mikey,” Diane said.

Perhaps the biggest endorsement Diane can give Fleming is this: He is one of the few people she feels comfortable leaving Mikey with.

“I’ve always been the kind of mom who sort of hovers,” Diane said.

Initially, she sat in the gym’s waiting room and watched Mikey work out. Then Diane would remain in the car and watch from the parking lot.

Now, she can use that hour to run a quick errand.

“It’s a big thing because Mikey is so comfortable with Mark, and Mark is so competent and understanding that I know Mikey will be fine with him for an hour,” Diane said. “There are very few people that I can leave Mikey with for an hour without Mikey becoming uncomfortable or distressed and there are no other people that I trust to handle a situation where Mikey becomes distressed.”

Excited to work out

Brittany Stakelum knows her son, Reid, would rather stay home and read a book or play a video game. The sedentary lifestyle, she said, fits many who are on the spectrum.

“They have more to offer than that, but they haven’t been around the right people in their lives who actually believe in them and will encourage them and tell them they can do anything they want,” Brittany said. “Mark’s mission is to help my son and his other clients to live their best lives.”

Reid stretches before a workout.

Reid has a part-time job in a supermarket. He used to struggle lifting and carrying cases of water. Fleming showed him the proper way to lift by using his legs. Problem solved.

Brittany also teaches children with special needs. She called Fleming “a breath of fresh air” for his dedication to working with clients on the spectrum and his desire to help them live a life that includes a degree of activity.

Fleming knows his clients do not need the same training he received when he was in school. Fleming, after all, was on the football team.

“A lot of kids I work with aren’t into that stuff. They don’t need that,” he said.

But what they need is the right exercises to get them off the couch, to improve their coordination, flexibility and strength. To improve their confidence, too.

Reid serves as an ambassador for the gym. Fleming posts pictures of Reid’s workouts on the Equally Fit’s Facebook page. For that, Reid received a $100 American Express gift card.

“He’s trying to show each person with autism that their time means something as well.” Brittany said. “Not only is he a great personal trainer, but he’s a great businessman, and he’s a great advocate and a great role model, especially with teens.”

Reid said he enjoys doing leg lifts. He said he likes going to Equally Fit because Fleming is “patient and encouraging” and is helping Reid get stronger.

Like gyms everywhere, Fleming had to close his for a few months during the outset of the COVID-19 pandemic. He continued to work virtually with some clients. Others found it difficult to complete the exercises without being in the same room with Fleming.

Reid found himself slipping back to his sedentary lifestyle. He could not wait for the gym to reopen.

“Reid is actually excited to go,” Brittany said, “and I don’t ever remember my son being excited to work out.”

Roger Mooney, marketing communications manager, can be reached at rmooney@sufs.org.

A pair of Step Up scholarships are a ‘godsend’ for the Hopstetters

By ROGER MOONEY

An email arrived in Michele Hopstetter’s inbox on July 16 that made her cry.

“Happy tears,” she said.

The notification came from Step Up For Students and informed Michele and her husband, Dan, that despite the recent increase in their annual income because Michele landed a full-time job, their daughter, Evelyn, will remain eligible for a Florida Tax Credit Scholarship until she graduates high school.

The “once in, always in” rule was part of HB7067, signed into law in late June by Florida Gov. Ron DeSantis. The bill expands the Florida Tax Credit Scholarship and Family Empowerment Scholarship, two income-based programs managed by Step Up. (Parents will need to complete an online application each year to indicate that their children will continue using the scholarship.)

Evelyn used the Florida Tax Credit Scholarship to attend Keswick Christian School in St. Petersburg, Florida, where she excelled last year as a first grader.

Evelyn Hopstetter

“Now she can stay (at Keswick) and continue to do well,” Michele said. “I was ecstatic. I really was. I cried because I was so excited.”

Michele and Dan live in St. Petersburg and have two children. Both attend school with the help of scholarships managed by Step Up.

Their son, Triston, a sixth grader at the LIFT Academy in Seminole, is on the autism spectrum and receives the Gardiner Scholarship for students with special needs.

Michele called the scholarships a “godsend.”

“It has helped us tremendously, because both our children are extremely bright,” Michele said, “I’m not just saying that because I’m their mom. I’m saying that because I’ve seen what they’ve done.”

Triston, who turns 12 this month, was 8 when diagnosed with autism, attention deficit hyperactivity disorder (ADHD), severe anxiety and depression.

“It’s been a very challenging time with him,” Michele said. “He’s very high-functioning. Very intelligent. But emotionally and socially he is so far behind.”

Prone to angry outburst, Triston struggled at his neighborhood school. Michele said it was because he had yet to receive his diagnoses and the school’s staff really didn’t know what they were dealing with. She learned of the Gardiner Scholarship from a neighbor and after researching schools, settled on LIFT, a private K-12 school that accepts all students but specializes in those with neurodiversity. Triston began attending the school in the second grade.

“I love everything about LIFT,” Michele said. “I would not take him anywhere else. He is thriving there.”

Triston Hopstetter

The Hopstetters learned of the Florida Tax Credit Scholarship as Evelyn was getting ready to enter first grade.

Dan works in the deli department at Publix. Michele said it was a struggle to make ends meet, but they were living in her dad’s house, and he was helping with some of the bills.

Michele was not working at the time. She was finishing her bachelor’s degrees in business management and human resources from the University of Phoenix with a full-time course load from the online university.

She began work on her college degrees in 2009 when the family lived in Chauncey, Ohio.

They moved to St. Petersburg in 2015, and Michele home-schooled Triston until he was diagnosed, and they learned of the Gardiner Scholarship and LIFT.

Having qualified for the Florida Tax Credit Scholarship, Michele began researching private schools in the St. Petersburg area. She settled on Keswick, because she liked the faith-based education and felt Evelyn would be challenged academically.

Turns out it was a perfect fit. Evelyn made the honor roll all four quarters as a first grader.

“That’s why she’s going to a school that’s way beyond our (financial) reach,” Michele said. “I know she’ll excel there.”

Diana Dumais, Keswick’s lower school principal, described Evelyn as an enthusiastic student who loves school and arrives each day with a smile on her face.

“She’s a real blessing in the classroom,” Diana said. “The teachers enjoy her little sense of humor. She’s just a great kid all around. She really works hard and wants to do better. She’s just precious.”

The Hopstetters, Thanksgiving 2019.

While Evelyn was enjoying her first year at Keswick, Michele received her degrees from the University of Phoenix and started working full-time in the human resource department at the Children’s Home Network in Tampa. Her salary raised the family’s income above the income ceiling for a Florida Tax Credit Scholarship. So, when she applied earlier this year for renewal, her application was denied.

“We were worried about what we were going to do,” Michele said. “We were going to have to move her, because we couldn’t afford (Keswick).”

The tuition for second through fourth grade at Keswick is $11,150 a year. Without the Florida Tax Credit Scholarship, Michele and Dan would have to pay more than $900 a month. That meant they were looking for another school. But that email on July 16 from Step Up changed everything.

Plus, Keswick informed Michele that Evelyn was eligible for some financial aid. That plus the scholarship reduced the tuition to $280 a month plus expenses.

“We would do what we could to help them, to keep Evelyn here,” Diana said.

Life, Michele said, has often gotten in the way for the Hopstetters. But Michele has her degree and a career that she expects to build upon, and Dan is up for a promotion at work. And, because of education choice, their children are thriving in their scholastic settings.

“Having the Step Up For Students’ scholarships has improved (our lives) to where my children are going to make it,” Michele said. “Especially my son.”

Roger Mooney, marketing communications manager, can be reached at rmooney@sufs.org.

‘Just because I have autism doesn’t mean I can’t shine’

Editor’s note: This is the second in an occasional series exploring career challenges and successes for those individuals on the autism spectrum.

By ROGER MOONEY

“Everyone has a mountain to climb and autism has not been my mountain, it has been my opportunity for victory.”

– Rachel Barcellona on Instagram

Rachel Barcellona will tell you her disability is not the fact she’s on the autism spectrum. The disability is the way others react to her being on the spectrum.

It’s the obstacles others placed before Barcellona when she was younger, either by teachers who didn’t believe in her ability to learn or classmates who bullied her because they saw her as different.

Barcellona didn’t fit in. She knew that. But here’s the thing: She never wanted to fit in. She wanted to standout.

“Just because I have autism doesn’t mean I can’t shine,” she said.

Oh, she shines.

Her list of accomplishments is quite long. Here are the highlights:

  • Barcellona, 23, is a fashion model and a beauty queen. She was the first woman on the spectrum to participate in the Miss Florida pageant and is under contract to model personal care and beauty products for Sephora.
  • She is an on-air personality for The Chapters Rap with Steve Vaccaro, a New York-based radio program that promotes unity and diversity.
  • She is on the board of the Center for Autism and Related Disabilities at the University of South Florida (CARD-USF) in Tampa.
  • She is on pace to graduate from USF in the spring of 2021, where she is double majoring in English/communications and creative writing.
  • She has sung the national anthem before basketball games at Madison Square Garden in New York.

Most of all, Barcellona is an advocate for autism.

She has her own platform which she calls The Ability Beyond Disability.

She has spoken at the United Nations during World Autism Awareness Day.

Her message: “I think that someone with any disability can become whatever they want. They just have to believe.”

Never give up

People believe in Barcellona. She wants them to believe in her. She knows the impact she has in the autism community, especially to young girls who see her as a role model.

“Families can identify with her story because it’s so multifaceted,” said Christine Rover, assistant program director at CARD USF. “It’s health challenges. It’s bullying. It’s ‘How do you get teachers to recognize my talents?’ Parents can relate to that story.”

Related: Adults on the autism spectrum are asking employers for one thing: A chance

But can their daughter grow up to be Miss Florida? Can they host a radio show? Can their voices be heard at the U.N.?

Why not?

Young girls on the spectrum tell Barcellona they want to be models and enter pageants.

“I always tell people to never give up,” Barcellona said.

In the United States, there are more than 3.5 million people on the autism spectrum.
In Florida, Step Up For Students helps schoolchildren on the spectrum meet their educational needs through the Gardiner Scholarship.
Managed by Step Up, the Gardiner Scholarship enables parents to personalize the education for children with certain special needs from age 3 through the 12th grade or age 22, whichever happens first.
During the 2019-20 school year, 13,035 schoolchildren received a Gardiner Scholarship. Of that total, 8,097 (62%) are on autism spectrum. Click here to learn more about the Gardiner Scholarship.

Barcellona grew up in Palm Harbor, Florida. She is the only child of Barbara and Frank Barcellona.

She was diagnosed with Asperger syndrome when she was 3. She also has dyspraxia (a developmental motor coordination disorder), dyscalculia (difficulty in learning math) and epilepsy.

The early prognoses from doctors were not encouraging. They said Barcellona would have a lifetime of learning and physical challenges.

Barbara Barcellona recalled watching Rachel struggle to hang her backpack on a wall hook while in kindergarten.

“I thought to myself, she’s never going to get that,” Barbara said. “As she got older, it was well she got this step and this step. She kept rising to the occasion. When she was younger people told her she would never go to school, and now she’s two semesters away from her bachelor’s degree.”

While she is very open about her past, especially the bullying in middle school, Barcellona doesn’t like to dwell on those days.

“I like to live life in the now,” she said. “I like to be happy and focus on what’s going to happen in the future. Just be positive.”

Her mom tells her that the past plays an important role in the future.

“I sometimes tell her you have to look back to see how far you’ve come,” Barbara said, “and sometimes looking back isn’t always easy.”

‘Me issues’

Barcellona was 10 when she decided she would change the world.

She was tired of being bullied in middle school and called “The Devil” by classmates and fed up with those who viewed her as different because she was on the spectrum. That included teachers, who she sensed didn’t know how to connect with students with special needs.

“There were lots of us,” she said. “There were autistic (students). There were people with other disabilities that were a lot worse, and nobody knew how to handle them. They were just kind of shoved into a corner, pretty much, and I thought, ‘That isn’t right.’”

Rachel and Barbara

Her anger boiled over one day when she couldn’t perform a task, simple to some, maybe, but not to her. Sensing Barcellona’s vulnerability, some of her classmates pounced.

“I could never do anything right,” she said. “They were just yelling at me that I was stupid, so I just yelled at everyone to shut up. Then I got in trouble, of course. The principal asked me, ‘OK Rachel, what’s wrong?’”

What’s wrong?

“They have me issues!” she screamed.

Then she cried.

“I was very emotional,” she said.

When Barcellona returned home that afternoon she went into her bedroom, grabbed a piece of paper and a pen and started listing the changes she wanted to see in the world.

While she doesn’t remember everything she wrote that afternoon, she remembers what she wrote first. She wanted to have a party for children with special needs.

Barcellona didn’t know it at the time, but she was building the foundation to The Ability Beyond Disabilities. Her ultimate goal is to open a school for students with special needs.

“I really love the fact that she wants to help other people,” Barbara Barcellona said.

People can change

Barbara started entering Rachel in local beauty pageants when she was 4. She thought it might help her daughter cope with her depression. It did.

Standing on the stage, Barcellona felt empowered. She loved to sing. She loved to entertain.

“I remember I got on that stage, I had a fear of coming off of it,” Barcellona said. “I liked showing people that I’m there. I liked just being there. I had a feeling people cared about me for who I was. I didn’t get that when I wasn’t on stage.”

Rachel at the United Nations.

Now, the girl with Asperger’s was drawing attention to herself for different reasons. She placed first at pageants. She was on Tampa Bay area TV shows talking about the difficulties of life on the spectrum and why it shouldn’t be that way. She appeared in the pages of fashion magazines, modeling the latest styles.

She sang the national anthem before a WNBA game in New York and before a Tampa Bay Lightning game in Tampa.

The little girl who was bullied for being different now had hockey and basketball fans cheering and saying, “Wow, I wish I could sing like her.”

Barcellona said it all comes from her heart. It has to. She knows her message must be sincere or people won’t listen.

Her goal is to prove that those on the spectrum can achieve many things. They just need a chance. That is why she is quick to share her story.

“I think she acknowledges that there have been some challenges and struggles for her, but she always says, ‘Yep, that’s life, but I’m not going to let it stop me,’” Rover said. “She really seems to turn it around and use it as fuel and say, ‘I want to help others who’ve had these obstacles put in their way,’ and just shines with it.”

For 10 years, Barcellona received therapy from CARD-USF. Now, she sits on the constituency board, where Rover said Barcellona provides the first-person voice of life on the spectrum.

“To see that come full circle is something I find incredible about her,” Barbara Barcellona said. “She doesn’t need to do that, but she generally wants to help other people. I think the world of her for it.”

Rover credits Barbara and Frank for guiding their daughter through those uneasy childhood moments and supporting her dreams.

“I always thought she was capable of achieving what she wanted to,” Barbara Barcellona said. “But there were oftentimes, especially during middle school, where she faced so many challenges, she had to be very strong. Even though you have a family and a good support system, it has to come from within. Even though we support her 100%, some of the stuff she really had to believe in herself.”

Barcellona is confident in her own abilities and future.  She will work in radio. She will have a modeling career. She will build that school for children with special needs.

She will use her platform to change the way people view those on the spectrum, the way they view anyone with a disability.

Every so often Barcellona hears from an old classmate which makes her happy and lets her know her message is being heard.

“The ones that were really mean to me in middle school end up emailing me and telling me how wrong they were, and they were sorry,” she said. “It’s nice to see that people change.”

Roger Mooney, marketing communications manager, can be reached at rmooney@sufs.org.

The many puzzle pieces that tell the story of Ryan Sleboda

By ROGER MOONEY

If it were any other spring but this one, Ryan Sleboda would stand in front of the graduates at the Pace Brantley School and, as valedictorian, would deliver his speech.

Ryan would tell the room filled with students and their families, teachers and administrators about living on the autism spectrum and how it shaped his life.

To illustrate his points, Ryan would hold a piece from a puzzle – the autism symbol.

One puzzle piece for his family. One for his friends. One for his teachers. Put them together and you see a picture forming of Ryan Sleboda.

“It’s going to bring people to tears,” Ryan, 19, said.

Ryan Sleboda breaks three concrete tiles to earn his third-degree black belt in taekwondo.

He hopes the visual has the same impact when viewed remotely. Since this is the age of the coronavirus, Pace Brantley’s 2020 graduation will be held virtually.

Disappointing, for sure, but not enough to damper Ryan’s enthusiasm for his graduation. Nothing really dampers his enthusiasm for anything.

“Ryan simply has a zest for life,” his mother, Susan, said.

That zest began to emerge when Ryan was 13. He joined a taekwondo class and developed self-confidence and a knack for leadership. It exploded two years later when Ryan attended Pace Brantley in Longwood, Florida as a ninth grader with the help of a Gardiner Scholarship managed by Step Up For Students.

The Gardiner Scholarship is for students with certain special needs.

During the 2019-20 school year, 13,035 schoolchildren received a Gardiner Scholarship, including 8,097 who are on the autism spectrum. 

Susan and her husband Bill, who live in nearby Sanford, wanted to send Ryan to Pace Brantley for high school. Brantley is a grade 1 through 12 private school that specializes in teaching students who need individualized attention.

Susan said she knew the school would challenge Ryan both academically and socially. With the Gardiner Scholarship covering most of the cost of tuition, Susan said she and Bill could use other funds to pay for Ryan’s medical expenses and social activities, like taekwondo and a dance program.

Those are also pieces to the Ryan Sleboda puzzle. There are more. Many more.

You can add his attempts at playing soccer, baseball, basketball and swimming as a youngster, because Ryan’s inability to take to those sports is what led him to taekwondo.

And it was in taekwondo where Ryan began to find Ryan.

“It was,” Susan said. “Ryan had had many difficulties behaviorally and socially. Ryan had a lot of difficulty regulating his behavior. He didn’t speak until he was 7.

“He had a very difficult time. Kids could be mean, and some kids knew which buttons to push to get Ryan to explode, and he could be very explosive back then.”

Yet Ryan found a calmness in taekwondo, a martial art that emphasizes jumping, spinning and kicking.

Susan and Bill took him to Breaking Barriers Martial Arts in Sanford, which trains children with special needs.

“It was kids with disabilities helping others with disabilities,” Susan said. “Ryan took to it quickly.”

Why?

“I got more energy,” he said, “being more active and communicating with others, being around other people, and definitely the ability to be a leader.”

And confidence?

“Lots of confidence,” he said.

Ryan has earned a third-degree black belt and is a certified taekwondo instructor, teaching other special needs children on Saturday mornings.

“It makes me feel like a leader when I get that opportunity,” he said.

Ryan holds the trophy he received for being named the University of South Florida’s Arts4AllFlorida program’s Student of the Month for Sept. 2019 for the documentary he made on the Pace Brantley School.

Ryan always wanted to be a leader, even when he was struggling to find himself on the baseball field or a basketball court. Society was telling Ryan what he couldn’t do, as it often does to children on the spectrum. His classmates and teammates were mean, as they often are to classmates and teammates who are perceived to be different. But Ryan felt it didn’t have to be that way, and he said he knew someday it wouldn’t.

He had weaknesses, sure. But Ryan also knew he had strengths.

Those strengths began to surface when Susan and Bill enrolled Ryan in Bridges Academy, a private K-12 school for children with autism and other special needs.

In an instant, Ryan was no longer different from his classmates.

“He was one of the students, and that’s what started him on the path to building self-confidence,” Susan said.

Ryan moved to Pace Brantley as a high school freshman. He was challenged, both inside and outside of the classroom. And he embraced those challenges.

“Ryan has grown up so much and truly wants to make a difference for others,” said Pam Tapley, Pace Brantley principal.

Not only will Ryan graduate as the class valedictorian, he is school president, an anchor of the school’s TV channel and a member of the running club.

He also gave a prerecorded speech online for Step Up For Students Class of 2020 Senior Celebration.

Ryan’s term project for the television class he took as a junior was a documentary on the history of Pace Brantley. He received an A for the assignment, and the video was voted the documentary of the year at the school.

The documentary also earned Ryan the University of South Florida’s Arts4AllFlorida program’s Student of the Month for Sept. 2019.

“The end product was wonderful, and he worked so hard on it to make it represent the history of our wonderful school,” Tapley said.

In collaboration with Chance 2 Dance, a program that works with students of all abilities, Ryan starred in a music video shot in the halls of Pace Brantley.

The song is “Waving Through a Window,” from the Broadway musical, “Dear Evan Hansen.”

“On the outside, always looking in
Will I ever be more than I’ve always been?”

The song symbolizes what children with special abilities go through.

Once, that was Ryan’s life.

Not anymore.

That puzzle piece has been tossed aside by others, including ones that are yet to come.

Through his vocational rehab program, Ryan scored an internship with the Central Florida Zoo’s conservation education department. He is fascinated with wolves and tigers.

“Very unique animals,” Ryan said.

In the fall, he will begin classes at Beacon College in Leesburg, Florida.

The college serves students with learning disabilities. Ryan will major in anthrozoology. He hopes to someday work at an animal shelter or a zoo.

“I’d like to build a really good facility with a lot of animals,” he said. “I could have a training program of some kind.”

That’s another puzzle piece – his future.

Ryan holds his acceptance letter to Beacon College.

Ryan could stand in front of a packed room or stare into his laptop for a virtual graduation ceremony and his message will be the same.

Yes, he is autistic.

No, it does not define him.

The puzzle pieces, they define him.

His family and friends. His school and teachers. Taekwondo. Dance. TV production. His love of animals. His desire for a career working with animals.

“Pretty much all the other stuff I’ve managed and done throughout my life,” he said.

Together, those pieces help build the picture of Ryan Sleboda. But it is far from complete, because there are still more pieces to come.

“I’m going to the next part of life,” Ryan said. “That will be extra hard, but I like challenges, and I am excited to see what comes next.”

Roger Mooney, marketing communications manager, can be reached at rmooney@sufs.org.

Adults on the autism spectrum are asking employers for one thing: A chance

Editor’s note: This is the first in an occasional series exploring career challenges and successes for those individuals on the autism spectrum.

By Roger Mooney

Six years ago, Joseph Show stood in front of then Florida Gov. Rick Scott and the Florida Legislature and talked about his life on the autism spectrum. He was not nervous.

Quite the opposite, he said.

Joseph Show before his 2014 speech at the Florida Capitol with lawmakers.

It was March 2014, a little more than a week before the April 1 start of Autism Awareness Month, and Show was eager to create awareness for some of the state’s most influential people.

“Hey,” he told the lawmakers,” we exist.”

That was a great way for Show to begin.

More than 3.5 million people in the United States are on the autism spectrum, and the advocacy organization Autism Speaks estimates 707,000 to 1.1 million teens will age out of school-related services each year during this decade.

The Gardiner Scholarship, managed by Step Up For Students, enables parents to personalize the education for children with certain special needs from age 3 through the 12th grade or age 22, which ever happens first.

During the 2019-20 school year, 13,035 schoolchildren received a Gardiner Scholarship. Of that total, 8,097 (62%) are on the autism spectrum.

What happens to those students after they age out of a school-based service? That’s what Show wanted to discuss at the Capitol with lawmakers.

Wearing a blue suit he bought the week before at Dillard’s for the occasion, Show explained that people with autism can accomplish many wonderful things. Sure, some may need more time or use methods that are different than those in the neurotypical population, but is that so bad?

Show finished with this plea, one made by far too many adults on the spectrum.

“Please,” he said, “don’t be afraid to hire us.”

Exact figures are hard to pin down, but the estimate of adults with autism who are unemployed nationwide is believed to be between 80% and 85%. Certainly, those numbers are even higher with the COVID-19 outbreak.

Show, 29, a web app developer for a software company in Tallahassee, Florida, finds those numbers difficult to digest even prior to the pandemic. He turned his degree in information technology from Florida State University into a career. He knows of others on the spectrum who experienced similar success.

“I have trouble reconciling that with these unemployment rates,” he said. “There are clearly people like me who did get jobs and are doing fairly well at them, so shouldn’t this rate be going down?”

Under-tapped talent pool

A 2018 story in the University of Washington Magazine said studies have found the biggest roadblock to employment among adults with autism who do not have intellectual disabilities is not a lack of ability but a lack of understanding social skills.

Few things derail a job interview quicker than an inability to make eye contact, too much information in answers or an increased anxiety from communicating with strangers in an unfamiliar setting – all traits common among those with autism.

Generally speaking, the traditional interview process is challenging for those on the spectrum.

Then there is the perception that employees with autism are difficult to manage, are prone to angry outbursts and take more sick days than their neurotypical co-workers.

Allison Leatzow, a consultant at the FSU Center for Autism and Related Disabilities (CARD), said the exact opposite is true.

“A lot of them are so into wanting to follow the directions, their work is their social life, that they’re actually more inclined to want to be there and do their best,” she said.

Those adults on the spectrum who are employed are generally found in two areas: the service industry and high-tech companies.

Some possess an extraordinary attention to detail that makes them ideal employees in jobs that require repetitive tasks. For others, their ability to detect patterns and knowledge of computers serves them well at software companies.

SAP, a German software maker, and Microsoft were among the pioneers in the high-tech world in targeting adults on the spectrum. Both created a hiring process to better evaluate autistic talent. The standard interview process was scrapped and replaced with team-building settings, where applicants worked together to accomplish a task. This is a better way to demonstrate an applicant’s talents and thought process.

SAP began this process in 2013. Within five years, it had hired 128 adults on the spectrum to fill roles in graphic design, software testing, data analysis, IT program management, quality assurance, human resources and finance administration.

“We don’t pigeonhole our candidates on the spectrum. We aren’t going to say, ‘Well, you’re only going to be good at certain things,’ because everyone has different interests and unique talents,” Jose Velasco, who oversees the Autism at Works Program at SAP, told CIO.com.

Not a function issue

Rising Tide Car Wash sits on a busy thoroughfare in Parkland, Florida. Purchased in 2013 by the D’Eri family, it is among the growing number of small business designed to employ a family member who is on the spectrum.

Andrew D’Eri vacuums the interior of an SUV at Rising Tide Car Wash in Parkland, Florida.

In this case, it is Andrew, 29. His father, John, looked for a business that he and his son, Tom, could run that would not only employ Andrew but other adults with autism. Tom said they wanted a business that was well-structed, detail-oriented and offered entry-level type work. After a year of research, they settled on a car wash.

“We wanted a business that could employ enough people to create a community and hopefully something that could really have an impact on the perception of adults with autism in the workforce,” Tom D’Eri said. “After preliminary research, it was pretty clear that a lot of people with autism have wonderful skills that are perfect for the workforce, but we, as a society, look at autism as a disability that requires sympathy instead of a really valuable diversity, and that perception issue is really why there is (a high) unemployment among adults with autism.”

Today, Rising Tide has two locations and employs 78 adults with autism, which makes up 80% of the workforce.

Tom D’Eri said the Parkland location averaged 3,000 vehicles a month in the year before his family bought the business. It now averages close to 17,000 a month.

The D’Eris also started Rising Tide U, a program to promote the benefits of hiring autistic workers and provide guidance to those who want to start similar businesses to help cut into that high unemployment rate.

“What is so amazing, sad, interesting – whatever word you want to use – is that this is almost completely a perception issue and not a function issue,” Tom D’Eri said.

Overcoming obstacles

Haley Moss was 3 when she was diagnosed with autism. Her parents were told she might never be able to hold a job or live on her own. A frightening forecast, for sure, but one her parents never believed.

Society placed obstacles in front of Moss, her parents helped her knock them down.

“When everyone else said no, they were the ones who said yes to at least give me the opportunity to try or keep pushing forward when other people didn’t have that faith,” Moss said.

Haley Moss on graduation day from the
University of Miami School of Law.

Moss, 25, is an autism advocate with psychology and criminology degrees from the University of Florida, and a law degree from the University of Miami. She is believed to be the first openly autistic person to pass the Florida bar exam.

Moss has her own apartment. She wrote two books about growing up on the spectrum and has contributed to a number of publications and websites, including the Huffington Post and Teen vogue. She is an artist.

She has not, however, overcome autism.

“That’s something I feel very strongly about, because I haven’t and that’s not something that’s going to exist,” she said. “I’m very proud to be on the spectrum.

“I have overcome the obstacles that society has in my way, the bias, the discrimination. People who don’t believe in you or think that you’re not capable of things, all that I’ve really overcome.”

Moss founded her own company to advocate for neurodiversity in the workplace and consult with companies on the benefits of an inclusive workforce. Her message is adults on the spectrum have strengths and weaknesses just like neurotypical adults. And, like neurotypical adults, those on the spectrum want the same thing: to be treated with respect.

“It’s being treated as a whole person is what we keep fighting for,” Moss said.

While it is encouraging to see companies reach into the autistic population, Moss would like to see more opportunities than those in the retail and STEM fields.

“I like to explain it like a grocery store,” she said. “We all see young adults working as cashiers or the deli counter. You know they probably are people with disabilities, and it makes you feel good. You love it. But are those same companies hiring people like me to work in their general counsel’s office?”

Working through the diagnosis

Mark Fleming believes that if he walked into a gym and applied for a job as a trainer he would not be hired because he is on the spectrum. That is interesting because Fleming has a bachelor’s degree in exercise science and a master’s in human performance from the University of Alabama.

So, Fleming, 31, opened his own gym, Equally Fit, in Tampa that serves clients on the spectrum.

Mark Fleming stretches at Equally Fit, the gym he owns in Tampa that serves clients on the spectrum.

He said some parents first view an autism diagnosis as a death knell for their child’s future. Fleming believes it should be the opposite.

“Once you get a diagnosis, you can understand more about yourself,” he said. “I may not be good at this, but it doesn’t limit me from owning a business or doing whatever I want to do. You might have some limitations, but it should never be, ‘My kid can never do this,’ or, ‘I won’t be able to do this because of this.’ It should be, ‘I’m able to do this because of this. I’m able to do other things, because I know myself more, I know that I might need help and that’s OK.’”

Joseph Show, Tom D’Eri, Haley Moss and Mark Fleming each used some variation of the word “frustrated” when asked about the 80% to 85% unemployment rate among adults on the spectrum.

Each feels that number can and will be lowered with education for the employees, the employers and even neurotypical co-workers.

Stereotypes must be erased.

In some instances, accommodations need to be made for an autistic employee. Yet, D’Eri said, that has a positive ripple effect.

“When we design systems that work for them, they work for everyone,” he said. “So not only do you get access to this wonderful talent pool, they help you build a better organization.”

How low can the unemployment rate go is, ultimately, up to employers.

“It’s good for everybody to have a neurodiverse workforce,” Moss said. “You have innovation. You have people that have different experiences working together. It’s about understanding, accommodating, and being accepted.”

Roger Mooney, marketing communications manager, can be reached at rmooney@sufs.org.

Military family on mission to raise awareness for Gardiner scholarships

The Gardiner Scholarship has been a lifeline for the Laurie Guzman and her son Ezra, diagnosed with autism.

By JEFF BARLIS

TAMPA, Fla. – Two months after her son was diagnosed with autism, Laurie Guzman felt broken and defeated, exhausted from searching for the right school.

A scholarship made her whole, if only for a short time.

Ezra was a tall, slender 4-year-old when he and his mom took a tour of LiFT Academy, a private school in Seminole that serves children with special needs.

Meeting the school’s executive director, Ezra furrowed his brow and narrowed his deep brown eyes.

“I’m a bad boy,” he stated as a matter of fact, “so I know you won’t let me come here.”

Kim Kuruzovich, equal parts caring mother and wizened educator, was stunned.

“There are no bad children,” she said, her voice raising an octave. “What are you talking about?”

“Oh, no,” Ezra said, “my teacher told me that. I’m a bad boy. That’s why I got kicked out of school.”

Kuruzovich knelt down to meet Ezra’s gaze and put her hands on his shoulders.

“You are not a bad boy,” she said. “You’re a great boy.”

She turned to Laurie and insisted Ezra enroll, if for no other reason than to learn he’s not bad.

Instantly, Laurie felt a great dam of tension burst with relief. She knew LiFT was where Ezra needed to be.

“I cried on the way home,” Laurie said. “It was heartbreaking. That was the first time I had heard him say he was a bad boy. We don’t use that in our house, so I knew where it was coming from.”

Ezra was 2 when his father, Air Force Sgt. Luis Guzman-Castillo, got orders to move to MacDill Air Force Base in Tampa. Two years later, Ezra’s explosive meltdowns had left whole classrooms trembling in his wake. Laurie was told to find a new preschool.

The diagnosis followed, but it didn’t bring clarity or relief. Instead, raw fear galloped through every synapse of Laurie’s mind as she drove home from the doctor’s office in a daze.

“I knew nothing about anything with autism,” she said. “I didn’t know what to do, where to go, nothing.”

She knew that Ezra was bright and verbal at an early age. She and Luis taught him with flash cards when he was 6 months old.

Ezra was so sweet and charming. Laurie could get lost in his eyes in one moment and then watch storm clouds gather in another.

The meltdowns were devastating. Kicking, screaming, crying, and sometimes running.

“They’re about 45 minutes,” Laurie explained, “and I’d be melting down with him by the end.”

She quit her job as a bank branch manager to stay home with Ezra and his little brother, Elijah. Laurie’s sister, who had two sons with autism back in their home state of Alabama was helpful. But there was so much to learn, it was easy to feel overwhelmed and lonely.

LiFT Academy broke the spell.

One of the tenets of the school is that parents are the experts on their children, so engagement is high. Kuruzovich, who has a daughter with autism, has an inviting way of sharing 20-plus years of experience with parents who are just learning how to navigate this world.

She told Laurie about the Gardiner Scholarship, a state program that allows families with children who have special needs to pay for therapy, tuition and other education-related services of their choice.

“The Gardiner Scholarship literally changed our lives,” Laurie said. “It made it so we are actually able to breathe. It gave me hope that my son can get help and learn like every other kid. I didn’t know that was going to be possible.”

Ezra felt more comfortable right away. He made friends. One teacher wondered if he really had autism.

Just wait, Kuruzovich said.

“When we saw it, it was pretty big,” she said of the inevitable first meltdown. “But it’s not a negative.”

That was the biggest relief to Laurie, who used to lose sleep worrying Ezra would get kicked out the next time he knocked over a desk. But at LiFT, the teachers, administrators and his therapists all know how to avoid and defuse meltdowns.

One year later, Ezra is in first grade, studying at a second-grade level. He even represented the school recently when some business people came to visit, telling them: “I love this school because I’m really safe. I can be who I am. People like me here.”

With structures in place at school and a home, everything was going well. Laurie had a plan to go back to work.

Then Luis’ new orders came. They’re moving to Alabama in January.

“Ezra is about to experience the biggest transition of his life,” Laurie said. “And he doesn’t do well with transition anyway. His school is going to change. His friends are going to change. His support is going to change. All of that keeps me up at night.”

Laurie has family in Alabama, but there is no special needs scholarship. The school she found charges $8,000 for tuition – paid up front. It’s a price tag that would make any working-class family swoon.

A proposal in the U.S. House of Representatives to create education spending accounts for some military families would have helped the Guzmans, but the House Rules Committee did not include it for a vote in May.

Rather than panicking, Laurie feels herself rising to the challenge of helping to create a scholarship.

Now, she’s the one with marching orders.

“We were meant to come to Tampa,” she said. “We were meant to get the diagnosis. We were meant to come to LiFT. And I am meant to go to Alabama and make the difference I can make.”

“That’s my mission, to talk to people eye to eye and say what we need, what would help. I’ll say, ‘Look at a mother and a father who got a diagnosis that was completely devastating, thinking our lives were over. And they’re not.’ ”

Jeff Barlis can be reached at jbarlis@sufs.org.