By ROGER MOONEY
Reading was a struggle for Maloni Lewis as a third grader. So was writing and math.
Her whole life was a struggle. Both parents were disabled. Her three older brothers had been to jail. They told their mom that going to school and being smart were not cool among the group they associated with.
Maloni’s mom was determined to end that cycle with her daughter.
Renée Lewis found Seven Rivers Christian School in Lecanto, Florida, near their home. With the help of the Florida Tax Credit Scholarship for lower-income families, she was able to afford the tuition at the pre-K through 12 private school. The scholarship is managed by Step Up For Students.
It took a few years, but Maloni eventually became passionate about her education. She played sports, and by her senior year of high school, her grade point average was 3.8. She left for college with the goal of becoming a nurse like her mom.
“Step Up For Students is a lifeline,” Renée said. “It allows kids and families to dream. What they thought was so far out of reach is possible.”
There are many reasons why children struggle in school. For some, the class size is too big, and they feel lost among the crowd. Others have certain special needs that cannot be fully addressed at neighborhood schools. Some kids are bullied. Some are hindered by language barriers.
And then there are those like Maloni, whose homelife is so challenging that school is not a priority.
Step Up can help.
Lower-income families can apply for the Florida Tax Credit Scholarship and the Family Empowerment Scholarship. Both scholarships are based on a family’s financial need, and both give families a choice to find a new learning environment for their child.
Parents use a single application for the scholarships and Step Up determines eligibility for either the tax-credit scholarship or the Family Empowerment Scholarship.
Parents of children with special needs can turn to the Gardiner Scholarship.
This scholarship allows parents to personalize the education of their pre-K through 12 children with certain special needs by directing money toward a combination of approved programs and providers. A list of special needs covered by the Gardiner Scholarship is found here under “eligibility requirements.”
Parents whose child is being bullied at a public school can apply for the Hope Scholarship.
In 2018, the Florida Legislature created the Hope Scholars to give relief for K-12 public school children from bullying and violence. The program provides families with financial assistance to send a child to an eligible private school, or to transport him to a public school in another district.
The Hope Scholarship, which is not based on a family’s income, provides families with financial assistance to send a child who suffered from a qualifying incident to an eligible private school, or to transport him or her to a public school in another district. The scholarship value depends on the grade level and county the family lives in.
The transportation scholarship is worth up to $750 and can be used to attend any out-of-district public school with available space.
Step Up has managed more than 1 million scholarships in the 20 years since its inception. These scholarships have been life-changers for the students and their families.
“I felt completely blessed to even have the scholarship. I don’t know what I would have done without it,” said Pamela Howard, whose son, Malik Farrell, reaped the awards of the Florida Tax Credit Scholarship.
Malik had been to four schools district schools in four years and repeated third grade after getting a report card filled with F’s.
Pamela learned of the Florida Tax Credit Scholarship and moved her son to Potter’s House Christian Academy, a pre-K through 12 private school in Jacksonville, Florida.
Weeks after enrolling, Malik’s older brother was murdered. The teachers and administrators at Potter’s House rallied around Malik. They eventually gained Malik’s trust, and because of that, Malik’s grades turned into C’s. He was a solid B student during his final two years of high school. He graduated and attended college in Tennessee.
Pamela credited Potter’s House and the Step Up scholarship for her son’s scholastic turnaround.
“To see my son just completely turn around, there aren’t even words,” she said. “That he overcame these struggles and turned out to become the young man that he is, there are no words to even explain how proud I am of him.”
Roger Mooney can be reached at rmooney@StepUpForStudents.org.
By ROGER MOONEY
At three months old, Joshua Sandoval was diagnosed with tuberous sclerosis complex, a genetic disorder where the body produces benign tumors.
The tumors are in his brain, and the medication needed to prevent daily seizures makes him fidgety. Staying focused during class can be a chore.
Teachers at prior schools told Joshua’s mother, Nilsa, that her son had behavioral issues and struggled to finish assignments. In the words of one, Joshua was “unteachable.”
Nonsense, Nilsa said. Her son can speak two languages (English and Spanish), is an avid reader and has an extensive vocabulary for a child his age. Joshua, now 13, just needed the right academic setting.
Like many parents of children with special needs and learning disabilities, Nilsa searched for a school that could meet Joshua’s needs. She found one at LIFT Educational Academy, a private one-through-12 school in Miami Lakes, Florida, not far from their home.
LIFT is a psychology, tutoring and brain fitness center that helps children develop the brain skills essential for learning.
After bouncing through six neighborhood schools since Joshua began first grade, Nilsa had finally found the right fit for her son.
There are a number of schools across Florida equipped to serve students with special needs. Many accept the Gardiner Scholarship, which allows parents to personalize the education of their children with certain unique abilities by directing money toward a participating school, a combination of approved programs and services, as well as other approved providers and resources. These include schools, therapists, specialists, curriculum, technology – even a college savings account.
This scholarship is for Florida students 3 years old through 12th grade or age 22, whichever comes first, with one of the following disabilities: Autism spectrum disorder, Muscular dystrophy, Cerebral palsy, Down syndrome, Phelan McDermid syndrome, Prader-Willi syndrome, Spina bifida, Williams syndrome, Intellectual disability (severe cognitive impairment), rare diseases as defined by the National Organization for Rare Disorders, anaphylaxis, deaf, visually impaired, dual sensory impaired, traumatic brain injured, hospital or homebound as defined by the rules of the State Board of Education and evidenced by reports from local school districts, or three, four or five year-olds who are deemed high-risk due to developmental delays.
The Gardiner Scholarship is a boon to children with certain special needs and their families. You can read here about Julian, who has cerebral palsy, hydrocephalus and a severe hearing loss that has impeded his speech, and here about Ryan, who is on the autism spectrum, and here about Valentina, who has Down syndrome.
You can read Joshua’s story here, though there is a postscript. LIFT Educational Academy went virtual during the COVID-19 pandemic. Nilsa said Joshua did not respond well to that type of learning. So, she searched for another school that would fit his needs. In short time, she found one – Aktiv Learning Academy in Miami, which is also close to their Miami Lakes home and accepts the Gardiner Scholarship.
Nilsa said the transition was smooth.
“Joshua is going to an in-person school that is simply fabulous,” Nilsa said. “He is super happy and back to learning.”
Roger Mooney can be reached at rmooney@StepUpForStudents.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
TALLAHASSEE, Fla. – There were more children like Karwen back in her native China, born with clubfoot and unable to walk. Some who would never take a first step.
At the orphanage where she had lived from an infant on, Karwen was surrounded by other children with special needs, covering the spectrum from mild to severe. Most of them did not get the attention they needed and deserved. But Karwen was one of the lucky ones.
In 2012 when she was 8, Karwen was adopted by an American couple, Keely and Nick Cogan. Her new life was transformative. In addition to having loving parents, she now had two sisters and a brother. With their help, she quickly learned to speak English. Her medical needs were promptly addressed. Eventually, she learned to walk.
The transition, said her father, Nick, “was atypically easy for her.”
But, as Karwen blended into her new family, she couldn’t shake memories of the children left behind, those who were headed for lives as outcasts. In her homeland, those with special needs are alienated.
Orphans may never know the love of a mother’s hug. May never roll their eyes at a dad’s joke. May never share a secret with a sister.
“After I came home it was nice, and I wanted to go and help bring somebody else home,” said Karwen, now 15.
So, while helping with the dishes one night, six months after her adoption, Karwen asked her parents if they could adopt again.
“I think we can be a family for at least one more,” she told her parents.
One more? Keely and Nick knew before they came home with Karwen they would return to China to adopt another child with special needs. But “one more” child became two when the Cogans adopted sons Kai and Kade. Three years later, daughter Kassi joined the family. They also have special needs and all four children use the Gardiner Scholarship, managed by Step Up For Students.
Today, the Cogans are a family of nine that’s soon to be a family of 11 when the adoptions of two children from the Ukraine are completed this spring.
“It’s easier than you would imagine,” Nick said of his growing family.
The daily workings of the Cogan family can be a grind at times, he said, just as they are for any large family. But the emotional part?
“Connecting to them as a family and trying to understand the struggles they have, I found that the easiest part,” Nick said.
Added Keely, “People say, ‘Oh you guys are so great,’ or, ‘What an amazing thing to do.’ The downright truth of it is we probably get the better end of the bargain because we look at the world so much different.
“My kids learned that it doesn’t matter where your brothers and sister come from. Someone can just come into your family and be a brother and sister and the world just got so much smaller.”
How one became four
Keely and Nick had three biological children– daughters Kenley and Kolya and son Kellin – when they decided to adopt. They learned of children in China who were left at orphanages because they were born with a special need.
Love Without Boundaries, an international charity that aids in the adoption of orphans, estimates that 750,000 Chinese children live in orphanages, with 98% of them having a special need.
“In China, physical differences are a major barrier, especially (for) children in orphanages,” Nick said.
“(Special needs are) considered unlucky,” Keely said. “Unlucky to the point of being contagious.”
Keely, a pediatric nurse, said she was not intimidated by the thought of adopting a child with special needs.
“It didn’t worry me,” she said.
Nick, a math professor at Florida State University, and Keely knew their biological children would be accepting and patient with their new siblings.
Karwen was first. She has arthrogryposis, the condition that results in a congenital joint contracture of two joints. She did have surgery in China but used a wheelchair. She had more surgeries after her adoption and can now walk on her own.
“I can do a lot more things now than I would have been able to do (in China),” Karwen said.
And about that request made shortly after joining the family? Keely and Nick already knew about Kai, who has cerebral palsy, and began the adoption process in 2013. That’s when they learned about Kade, who also has arthrogryposis. His condition is limb immobilization. He cannot bend his knees.
So, Keely thought, what’s one more child?
The transition for the boys was not as smooth as it was for their sister.
Kade didn’t know how to be held, because contact with adults in Chinese orphanages is limited to prevent the formation of a bond that might someday be broken if the child is adopted.
Kade would stiffen when Keely tried to hold him. He also cried himself to sleep each night, sometimes for as long as five hours. Keely said it took nearly six months for Kade to accept being in his mother’s arms.
It wasn’t long after adopting the first three when Keely and Nick found themselves working as advocates for orphans in China. That’s how they met Kassi in 2016.
Kassi, who has cerebral palsy, was nearing her 14th birthday, the deadline for a child in China to be adopted. Once they turn 14, those who are employable are given jobs. Those who are not, continue to live in institutions, Nick said.
“We felt like we were set up for this need,” Keely said. “It wouldn’t be a hardship for us, so we stepped forward and home she came three days before she aged out. If we got there three days later there would be nothing we could do.”
Kassi, now 17, was also born with clubfoot, which is a complication associated with CP. She actually learned to walk on her ankle bones, though mostly moved around on her knees. After her adoption, she underwent a series of castings that stretched the muscles in her feet and ankles. She walks today with the aid of her forearm crutches. Though she has a walker, she rarely uses it.
The Gardiner Scholarship at work
All the children are currently homeschooled, but over the years some have received physical, occupational and speech therapy, and some have used tuition assistance. Each child had unique needs.
For instance, Karwen, her hands are locked in a downward position because of her arthrogryposis, has a custom keyboard for her computer and special grips to hold pencils and pens.
Kade, 8, attended a small private school for two years. He stopped this year because construction at the school made it tough for him to walk around the campus. He plans on returning next year.
The children came to America with not much of a formal education.
That posed a problem. The district schools didn’t know where to place them.
Keely said the district wanted to put Kai in middle school. That would not be fair to a student without the foundation of an elementary school educational who is also trying to learn English.
The answer was homeschooling. This way Keely and Nick could place their children in education-appropriate settings.
An adoption advocate
Kenley, the Cogan’s eldest biological child and a student at Tallahassee Community College who is pursuing a career in art therapy, works for two nonprofits that advocate for international adoption. She has traveled to China and Ukraine to assist families during the adoption process. She is conversational in Mandarin and is learning to speak Russian.
Kenley said it is “agonizing” to visit a Chinese orphanage and see rooms filled with children lying in rows of cribs, devoid of human contact and staring aimlessly.
“It just kills you to look at them and wonder what their potential could be if they had a family,” she said. “You want to hug them and take them home.”
Kenley said she knew when Karwen came home that adoption would be a major part of her life. She expects someday to adopt a child with special needs from China or Ukraine.
“That’s where my heart is,” she said.
Big and getting bigger
They refer to themselves as the Cogan Krewe.
They drive around in a 15-passenger Ford Transit Van, which they have nicknamed “Moby” because it is large and white.
It is a sight to see the family file out of the van.
“Like an airport shuttle bus,” Nick said.
“It’s a spectacle,” Kenley said.
Even when loaded with the full Krewe, there is room for a few more passengers. That’s good, because they expect to soon finalize the adoption of Sasha, 16, and Vova, 14, a brother and sister from Ukraine, who do not have special needs.
What? No ‘K’ names?
They will have that option, Keely said.
What began with the biological children has continued to those who were adopted.
When Karwen joined the family, she was given the choice of keeping her Chinese name or choosing and American name. She picked American.
“And she wanted it to begin with K to be inclusive,” Keely said.
The next three were given the same option. Obviously, they opted for a name beginning with the letter K.
The kids joke that Nick should spell his name “Knick.” He even signs Knick on the family Christmas cards.
“Wouldn’t want to leave anyone out,” Keely said.
Roger Mooney, marketing communications manager, can be reached at firstname.lastname@example.org.
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 email@example.com.
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.