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.
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.”
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 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 email@example.com.
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.
“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.
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.”
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.”
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 firstname.lastname@example.org.
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:
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.”
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.?
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.”
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.’”
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?’”
“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.”
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 email@example.com.
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.
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.”
“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.”
“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 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.
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 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 firstname.lastname@example.org.
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.
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 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
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.
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.
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.
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, , 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 email@example.com.
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 firstname.lastname@example.org.
By GEOFF FOX
Ethan Alexander was decompressing in a multi-purpose room at Jacksonville School for Autism.
The lights were out in the room, as the blinking and hum of fluorescent lighting can be bothersome to some students. But the sun was shining through a large glass window, and Ethan, 9, was burning off energy by bouncing on a large blue exercise ball.
Clinical therapist Jasmine Stevens watched Ethan with a warm smile. After a few moments, she had him take deep breaths and whatever anxiety he previously felt seemed to evaporate.
Thanks to the Gardiner Scholarship for students with certain special needs, Ethan and his older brother Ashton, 11, have attended Jacksonville School for Autism (JSA) for two years. Step Up For Students helps manage the scholarship.
Before attending the school, Ethan struggled with reading and math, and didn’t socialize easily.
“His academics have improved greatly and he’s much more engaged with his peers,” Stevens said.
Jill Thomas, the school’s marketing and development director, entered the multi-purpose room as Ethan was counting backwards from five in the voice of his favorite character in “Monsters, Inc.” She asked how he was doing.
“Good!” Ethan said, adding that he hoped to soon see the movie “Black Panther.”
Noticing that Ethan’s earlier anxieties had subsided, Thomas fired a couple questions at him.
“Hey Ethan, what’s five plus five?” she asked.
“Ten!” he said quickly.
“What’s six plus six?”
After a moment, and a couple of bounces, he answered correctly: “Twelve!”
He was clearly pleased with himself.
As Ethan spoke with Thomas, his older brother Ashton was roaming on an elaborate outdoor playground. Keeping to himself, he walked, tightrope-style, along narrow planks that lined the area. The day was warm and a slight breeze blew through his short blond hair.
He was the picture of contentment.
Caitlin Alexander, Ethan and Ashton’s mother, said she worried greatly about her oldest son before they attended JSA. She and husband Van, a regional sales manager for a medical-device company, live in Jacksonville.
“Ashton had horrible behaviors that are now gone,” she said. “He would self-injure himself. His escape from a situation would be to smash his head against something hard. It could have been because of something someone said or something he heard, which made daily life a huge struggle.”
Ethan and Ashton previously attended a different school in the area. When their favorite teacher, Breiyona Baltierra, moved to JSA, she encouraged the Alexanders to visit.
“We fell in love with the school, too,” Caitlin Alexander said.
Tour JSA’s campus and it’s not hard to understand why. The school opened in 2005 and has been in the building formally occupied by an architectural firm since 2013. The school began with only two students, but there are now 60 – who range in age from 2 to 31 – and a waiting list. Ten of the school’s current students are on the Gardiner Scholarship program.
The school is housed in a spacious, two-story building with elaborate skylights in several classrooms.
Still, Thomas said, “There’s no more physical space. We get multiple calls a day from people wanting to get on the waiting list.”
On the first floor are several classrooms and a clinical wing where most students spend half of each day working one-on-one with a therapist.
Students who need individual therapy have their own cubicles where they can work without interruption.
Upstairs is a library that includes a Wii set-up, additional clinical spaces and more classrooms.
Inside a music room, piano teacher Twila Miller, known as “Mrs. Ty,” was teaching student Srinidhi “Sri” Aravind notes on a piano.
“Tap, tap, tap, tap,” Miller said, as Sri, a Step Up scholar, struck the correct keys in the proper rhythm.
“We’re learning how to hold the note,” Miller said. “The piano is a wonderful tool to learn to make your hands do what you want them to do.”
Sri kept playing, deliberately at first, but gaining confidence as she went.
“Isn’t that beautiful?” Miller said. “It sounds like the piano is talking to me.”
An occupational therapy classroom features resources and equipment that help students work on speech, writing and other fine motor skills, such as gripping objects properly.
Gym mats line the floor. There is also a large swing and a “ball pit,” where students can burn energy playing with plastic balls in a safe area.
“A lot of our students struggle with communication, so everything they learn academically is in a social setting,” Thomas said. “It may look like they’re playing games, but they’re learning how to interact and respond appropriately to one another.
“Some of them are constantly fighting their bodies to sit down and be calm.”
The school also has an adult vocational program in which participants help prepare lunches for students, as well as cleaning up and dishwashing.
“We want to teach them anything that can translate into a job,” Thomas said.
A dozen local businesses – including restaurants, grocery stores, thrift shops and a food pantry – routinely hire JSA students for part-time work. Spectrum Shredding even has a shredding machine at JSA, so some students can work without leaving the campus.
School officials hope to eventually open a separate center focused on residential and educational services for adults on the autism spectrum.
“We don’t want them to graduate high school or turn 22 and then have nothing to do,” Thomas said. Students are eligible to receive the Gardiner Scholarship until age 22.
The school needs 20 to 30 acres of land to build what is tentatively called the Autism Center for Residential and Educational Services. The trick is finding land close enough to the existing school – as well as raising money for the project, which would include housing, an auditorium, wings for elementary, middle and high school, a gymnasium and cafeteria.
“We want to offer Applied Behavior Analysis therapy and really expand our vocational programs and employment placement,” Thomas said. “There’s also a residential living component – supportive living. A lot of our students will not be able to live totally independently, but we want them to have all the resources they need to thrive and live in a supportive community.”
It is that attention to students’ overall well-being that attracted the Alexanders and the dozens of other families JSA has served.
Caitlin Alexander marveled at the progress her sons have made there in a relatively short time.
Ethan has been transformed from a student who didn’t like interacting with others into one of the school’s most outgoing students.
And Ashton’s behavioral issues have improved as dramatically as his interest in numbers has grown. He also has become proficient with Microsoft PowerPoint, which he uses to make slide shows, charts and graphs for various projects.
“He’s also really getting into coding,” his mother said. “You never know. He could be the next Steve Jobs.”
Geoff Fox can be reached at email@example.com.
By DAVID TUTHILL
Josh Clay sometimes speaks at such a frantic speed he needs to slow himself down.
But he speaks with authority on so many topics – from theater, to the band Green Day, to the world of comedy – that you would never believe the challenges he’s overcome.
The 15-year-old was born with Asperger’s syndrome. Considered to be at the high-functioning end of the autism spectrum, those with Asperger’s often have difficulty with social interactions, and may exhibit compulsive behaviors and repetitive movements. They also tend to show an intense, all-absorbing interest in topics they enjoy.
In preschool, Josh often hit milestones later than his classmates, and he exhibited behavioral tics associated with Asperger’s.
In elementary school, he was placed on an Individualized Education Plan to help him navigate the special education he needed, which seemed to work. He was on an adequate academic pace and he made good acquaintance with fellow students. Thanks to a strict school policy, bullies were virtually nonexistent.
When it was time to start middle school, other potential issues came into focus. Josh was an “out of zone” Title I student for elementary school, but a lack of room in the preferred middle schools meant Josh would have to attend the school near his address, where he knew no one, and no one knew him.
His parents, Edward and Julie Clay didn’t feel confident their neighborhood school in Naples, Florida, could accommodate him academically.
So, Edward and Julie decided to home-school Josh in sixth and seventh grade.
“Josh was academically fine in elementary school,” Julie Clay said. “He was just a little fidgety. We decided home schooling for middle school was probably for the best as he got older.”
Josh’s sixth- and seventh-grade years were successful. His mother had no plans of putting Josh back in school, but things were about to change.
Knowing his diagnosis meant he would always need extra attention and therapy, Julie Clay took Josh to a behavioral therapist before he started eighth grade this year.
The therapist told her about two things that would change the direction of Josh’s education: the Gardiner Scholarship for families with children with certain medical diagnoses, such as Asperger’s, and De LaSalle Academy, a private school for students with special needs in nearby Fort Myers, Florida.
“When I heard about (De LaSalle) I thought, ‘Wow, this would be really great for him. Let’s walk down this path and see if it’s the right fit,’” Julie Clay said.
On his first visit to De LaSalle, Josh noticed how different the school was from his previous ones.
“I saw they all had classes with kids who reminded me of me,” he said. “I got along well with the teachers, and I liked that the only homework was classwork that we didn’t finish.”
While Josh was eager to attend and blend into the De LaSalle culture, there were some growing pains. He applied for and received the Gardiner Scholarship through Step Up For Students.
His situation was nothing new to De LaSalle Principal Lori Riti. Under her direction, the school’s speech language pathologist, social communication , occupational therapist and counselor all work in tandem for students like Josh.
“Josh came here with some social issues, mainly with getting along and connecting in a way with other kids that was healthy,” Riti said.
Some of the issues Josh mastered at De LaSalle Academy were interpreting nonverbal communication and perception, as well as conflict resolution. The school’s specialists made tremendous strides with him. One of his closest friends at school was once a child with whom he argued and fought with regularly.
“Josh had some onboard skills, but he had to take where he was and develop much further,” Riti said. “He wasn’t successful until he had direct intensive work. I give a lot of credit to our teachers and advisors for his success.”
His achievements aren’t limited to the classroom. Josh has become one of De LaSalle’s star theater performers. He recently starred as Long John Silver in the school’s rendition of “Treasure Island.”
This winter, the school’s Performing Arts Club will perform the Christmas classic, “It’s a Wonderful Life.” De LaSalle’s stage will be designed to look like an old-time radio station, and Josh will play several roles, including the “warped and frustrated” Mr. Potter, Mr. Gower, the druggist, and Ernie, the cab driver.
A natural performer, his penchant for inspiring laughter at school is legendary.
On a recent weekday, he told one of his favorite jokes about ordering steak at a restaurant: “When they asked how I wanted it cooked, I said, ‘On a stove.’”
While Josh’s favorite band is Green Day, he strongly warns against their occasionally profane language. The family saw the band perform live in September. Since the tickets were purchased in January, Josh had to wait nine months.
It was worth it.
The show, he said, “was legendary.”
Josh said he hopes to someday attend Florida Gulf Coast University in Fort Myers, where he wants to continue improving his acting chops and hone his comedic talent.
As for his experiences at De LaSalle, he couldn’t be happier.
“For parents who want to send their kids to this school, well, it’s the greatest school in the universe,” Josh said. “It will be the greatest move you ever do.”
David Tuthill can be reached at firstname.lastname@example.org.
By GEOFF FOX
Wesley Hamilton, a curious, curly-haired six-year-old was blessed with a high IQ.
When he was 3, a preschool teacher asked his class to say words that started with “a.” While many of his classmates answered “apple” or “ant,” Wesley said, “actually.”
He started having some uncommon struggles at a young age, said his mother, Emily Ashworth Hamilton, chief technology officer with ABB Optical Group in Coral Springs.
He didn’t like having his fingernails clipped.
He wouldn’t touch things with his hands, including food.
He stopped making eye contact with other people.
He had trouble sleeping, and when he did sleep, he often had nightmares.
He also would overreact to “the simplest things,” said Ashworth Hamilton, who lives in Miami with Wesley, her 2-year-old daughter Holly and husband Bill Hamilton, a mobile software architect with AT&T.
“He would have kind of the classic 2-year-old temper tantrum, but they never ended,” she said. “Not only in the moment, but they’d just never stop. His language was sort of odd, too, but he was incredibly verbal. His sentences were very deliberate, but the words he used were huge.”
In April 2015, Wesley was diagnosed as being on the “high-functioning” end of the autism spectrum.
Ashworth Hamilton eventually applied for and received a Gardiner Scholarship through Step Up For Students. The state-funded scholarship is for students between 3 and 22 and who have disabilities including: autism spectrum disorder, muscular dystrophy, cerebral palsy, Down syndrome, Spina bifida and other impairments.
The scholarship allows parents to personalize their child’s education by directing money toward schools, therapists, specialists, curriculum and technology, as well as a college savings account.
Last year, Wesley’s family used the scholarship to help pay for Applied Behavior Analysis therapy through Optimum Behavioral Services in Sunrise. Ashworth Hamilton said the therapy is not covered by her insurance.
Much of Wesley’s first year of therapy was not spent in a school or social setting, but “in a clinical environment,” she said.
“It could pertain to playing with others appropriately, or in a classroom, or following the instructions of a parent or adult in charge – how to react appropriately in certain situations,” Ashworth Hamilton said.
“(Children on the autism spectrum) have to be explicitly taught. They can’t simply observe or follow other people’s leads.”
Blanca Onetto, clinical director at Optimum Behavioral Services, where Wesley is a patient, said therapists quickly realized Wesley was very bright, with an enthusiasm for learning and a healthy sense of humor.
She said he enjoys music – particularly Queen’s classic rock hit, “We Will Rock You” – using his iPad, building with blocks, and playing with toy airplanes, cars and construction materials.
However, Onetto said, Wesley had difficulty communicating “across multiple contexts,” such as “social-emotional reciprocity,” non-verbal communication used in social interaction, and developing, maintaining and understanding relationships.
Sometimes, Onetto said, he threw the tantrums his mother described, displayed physical aggression and had anxiety issues.
Peer training, positive reinforcement and “naturalistic-incidental teaching” at the center has helped improve his conversational skills, while therapies to assist with shyness and impatience have included participation in a social skills group that features role playing.
To address tantrums and aggression, the center has used therapies that “decrease Wesley’s inappropriate behaviors by replacing them with appropriate ones,” Onetto said.
“Our goal is to teach Wesley appropriate social interactions, which at the same time would help to develop many other skills, including listening, attention, reading body language and social references,” she said. “He has shown considerable progress on all his treatment goals, but we will continue working on achieving higher standards.”
Onetto’s team of therapists have accompanied Wesley to school, thanks to Gardiner. This has helped Wesley transition into an academic environment and a mainstream classroom successfully with the support he needs.
Ashworth Hamilton said she did not want Wesley to go to his neighborhood elementary school, where, thanks to his high IQ, he would likely have been mainstreamed into a large class with a teacher who may not have experience handling students with special needs.
Through the Gardiner Scholarship, Wesley attends Miami Shores Presbyterian Church School, a kindergarten- through fifth-grade private school with a preschool program. He is now in first grade.
Ashworth Hamilton said she’s now optimistic Wesley will be better able to manage his anxieties, focus on tasks and increase his “functional capabilities.” His successful integration into a mainstream classroom is due to the partnership at school between parents, teachers and therapists and is building a strong foundation for Wesley.
“The goal is to build him up so the support needed will decrease over time,” his mother said. “I think he will continue to need a learning environment that is very much able to have some flexibility with his learning style; he’s very visual and has lots of sensory stimuli to contend with.”
Onetto is also impressed.
Because Wesley is high-functioning, Onetto said she doesn’t see any reason why he won’t be able to someday live independently and lead a fulfilling life.
“Each individual with autism is unique,” she said. “Many of those on the autism spectrum have exceptional abilities in visual skills, music, and academic skills. About 40 percent have average to above-average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and atypical ways of viewing the world. Others with autism have significant disability and are unable to live independently.
“With the appropriate support, (Wesley) will be a productive and successful citizen – maybe another Bill Gates!”
Reach Geoff Fox at Gfox@sufs.org.
By GEOFF FOX
It was just after 10 a.m. and dozens of students at Pace Brantley School were in the middle of campus, kicking soccer balls in a large field, playing on a jungle gym, swinging and jumping rope under a cloudless sky.
Their voices and laughter were carried on a light breeze that shook Spanish moss in dozens of majestic oak trees that line the sprawling, nine-acre campus.
It was eighth-grader Ben Zanca’s favorite time of day.
“I like it because I get to make friends, and you get to do a lot of fun things,” he said.
Ben has asthma, cerebral palsy, autism and CLOVES syndrome, a rare disorder characterized by tissue overgrowth and complex vascular malformations. After struggling in public school and at a charter school, he was thriving in his first year at Pace Brantley.
“His self-confidence has increased tremendously,” said his mother, Ann Zanca. “It’s a lot of hands-on learning. He made a car out of a Coke bottle and started telling me about Newton’s laws of motion. His reading had regressed when he went into middle school, but here his reading, spelling and writing has much improved. And he’s enthusiastic about going to school.”
In 2016-17, Pace Brantley served over 170 second- to 12th grade students. Ben was one of about 35 students on the Gardiner Scholarship for students with certain special needs. The scholarship is managed by Step Up For Students.
The school includes seven buildings, an outdoor basketball court and well-manicured football and baseball fields. The campus had one building, a former house, when the school opened in 1971. Additional buildings have been added as needed, and as money was available. The school has always been geared toward students with learning issues.
“The majority of our students have a difficulty such as auditory processing disorder, dyslexia or ADHD,” said Jennifer Foor, Pace Brantley’s elementary and middle school principal. “Some of them are on the autism spectrum, but on the high-functioning side. The kids on the spectrum are not here because of behavior concerns.”
Pace Brantley currently has three mental health counselors on campus, as well as an occupational therapist, speech pathologist and full-time nurse who specializes in handling students with anxiety issues.
This year, the school even “hired” Ben, a therapy dog who lives with school nurse Tara Mahoney and comes with her to work every day – like a law enforcement K-9 officer. An American breed mix, Ben is quick to lick the hands of strangers. When he is tired, he is not shy about dropping to the floor and stretching with a low yowl.
Ben has been immensely popular since his Jan. 3 debut on campus. Whenever students are feeling especially anxious, they can see Mahoney – and Ben.
“It’s positive redirection and visualization. I speak in a calm voice and there’s low lighting,” Mahoney said. “We typically end up on the floor. They can convey their feelings to Ben or just pet him. Usually, after 10 or 15 minutes they’re ready to go back to class. There’s a more relaxing vibe with him being here. He makes everybody feel more comfortable.”
Pam Tapley, who has been Pace Brantley’s head of school for three years, is always looking to incorporate effective, innovative concepts to benefit her students. She was previously an assistant superintendent of schools in Osceola County and has been a high school principal.
“I’m passionate about providing the environment that allows students with differences to be celebrated and surrounded by people who honor and respect that, but also believe they can be successful,” Tapley said. “We have a wrap-around philosophy. We want to provide the environment for students to be successful, but we do it with the parents, with the occupational therapy, with the speech therapy, the mental health therapy.
“We wrap the whole family into the support. A lot of times the families are frustrated. They’re seeking answers and support and we give that to them here. They don’t feel isolated anymore.”
The environment includes everything from cutting-edge technology in classrooms to practical lessons outdoors.
For example, there is a television production studio, where morning announcements are made under the supervision of instructor Katie Nichols and broadcast through the school. The studio features a green virtual television studio background, Macintosh computers, iMovies for editing, three cameras and a teleprompter.
There is also a greenhouse, where students grow snap peas, tomatoes, lettuce, kale and cabbage under the guidance of science teacher Suzy Grimm. Toward the back of the campus is the Arts Building, where drama classes are held. This year, the school is working on a production of “Aladdin.”
Ninth-grader Ryan Sleboda, a first-year student at Pace Brantley, said he loves the school.
“It’s more challenging than my other schools,” said Ryan, a Gardiner scholar who was diagnosed with autism. “The other schools just did the basics. This really is way more interesting.”
Those on the autism spectrum also benefit from social skills groups in which they learn to better interact with their peers.
“They go over eye contact and body language during personal interaction,” Foor said. “They learn how to react in situations and have conversations.”
The campus’ newest building is the high school, which opened in the 2010-11 school year. Besides classrooms and lockers, the high school features a complete science lab.
“They do dissections in there and everything,” Foor said.
According to Tapley, the school may not be done growing. She hopes to begin a capital campaign to build a vocational center on campus. Tapley is involved with the Greater Sanford Chamber of Commerce and often talks to business leaders in the community to determine what kind of employees they need.
It’s a way of helping her students succeed after graduation.
“What are we providing in a learning situation that gives them the time to learn to be valuable employees?” Tapley said. “We’re gathering the data now. We’re looking at (careers in) plumbing, construction, air-conditioning, culinary and early childhood. We want to look at the employability rates, because you don’t want to flood the market.”
Susan Sleboda, Ryan’s mother, said the school has been a blessing for her entire family.
“He has blossomed because of being at that school,” she said. “What they offer these kids – the environment, in particular – is in my opinion revolutionary. For a child like mine, who can’t typically succeed in a learning environment, it’s like a puzzle fitting together. For Ryan, it provides the perfect environment. The teachers are understanding of your child’s disabilities, as well as their abilities.
“It would be difficult to afford without the scholarship. It would be like paying another college tuition.”
Geoff Fox can be reached at email@example.com.