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

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

By ROGER MOONEY

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

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

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

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

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

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

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

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

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

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

The results, she said, are beyond encouraging.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Education savings accounts offer creative solutions for students with learning differences

Editor’s Note: This post originally ran March 25, 2021 on the redefinED blog, which is hosted by Step Up For Students. This is the third in a series of stories exploring the Gardiner Scholarship Program.

By Lisa Buie

Chrissy Weisenberger is one busy mom.

With five children, including 3-year-old twin boys and two daughters who are both on the autism spectrum, homeschooling the whole brood made the most sense for the family. It allows her to design each child’s learning plan to best fit his or her educational needs.

“It’s very Frankensteined,” joked Weisenberger, who lives in Palm Bay, Florida, a city southeast of Orlando known for its sports and nature parks.

By that, she means like many homeschool parents, she has strategically used a little of this and a little of that, a grassroots method of creating the perfect learning environment for her family.

Her two daughters, Keira, 8, and Tessa, 6, are on the autism spectrum and participate in the Gardiner Scholarship Program for students with unique abilities. The scholarships allow parents to customize their child’s education by using flexible spending accounts called education savings accounts.

While traditional vouchers pay for private school tuition, the savings accounts are more flexible. The Florida Department of Education transfers a portion of a child’s funds from the state education formula to a state-approved nonprofit organization, such as Step Up For Students, which puts these funds into an account for each child. Parents then apply to this nonprofit for permission to use their child’s ESA funds to buy state-authorized educational services and products.

Chrissy Weisenberger of Palm Bay, Florida made creative use of her education savings account, converting a swimming pool into a ball pit for her two sensory-challenged daughters. Sometimes, the whole family joins in.

The girls need help to stay focused on learning, so in addition to purchasing educational materials such as books and workbooks, Weisenberger has used her daughters’ education savings accounts to buy specialized equipment such as swings, which calm kids with autism, and a mini trampoline that helps with balance and gross motor skills.

She bought two chewable necklaces for Keira, who otherwise would chew on her hair during class. She bought the girls laptops to access virtual lessons in math and reading, which she says were a godsend during the pandemic when co-op meetings with other homeschool families were canceled. And she bought them a kit that taught them how to build a volcano.

Most Gardiner families typically make purchases through MyScholarShop, Step Up For Students’ online catalog of pre-approved educational products. The platform includes curriculum materials, digital devices, and education software. Families may be able to purchase items or services not on the pre-approved list by submitting a pre-authorization request that includes supporting documentation and an explanation of how the purchase will meet the individual educational needs of the student. 

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

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

Weisenberger followed this process to purchase one item not on the pre-approved list: a $25 inflatable kiddie pool.

While a swimming pool would not qualify as a reimbursable expense under the program’s rules, Weisenberger’s proposed use made it eligible. Inspired by a Pinterest post, she converted the rectangular pool, which she ordered from Amazon, into a ball pit that she filled with almost 3,000 plastic balls. Her girls use the reconfigured pool to help them with balance.

But Weisenberger’s creativity extends further. She’s devised a way to use the pool to help her kids with math.

Using three buckets, she teaches place value by having them put the appropriate number of balls in each. For example, the number 436 would be represented by putting four balls in the hundreds place bucket, three balls in the tens place and six balls in the one place buckets.

The inventive mom has found yet another way to utilize the purchase. She pours the balls over Keira as a way to soothe her sensory-challenged daughter.

Weisenberger, who learned about Gardiner from a speech therapist two years ago, said she is very pleased with the program. While she suspects two of her other children may qualify for a scholarship, the funding she presently receives satisfies the family’s learning needs.

“I don’t want to take it away from somebody else who needs it,” she said.

Lisa Buie is online reporter for redefinED.

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

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

By ROGER MOONEY

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Horse therapy opens new world for blind teen

Editor’s Note:  This post originally ran March 11, 2021 on the redefinED blog, which is hosted by Step Up For Students. This is the first in a series of stories exploring the Gardiner Scholarship Program.

By LISA BUIE

Yvonne Clanton realizes some might question why a state scholarship would pay for kids to ride horses.

She wondered herself, until her daughter Sarah began attending weekly sessions at Emerald M Therapeutic Riding Center in Brooksville. The farm is nearly an hour from the Clantons’ home in Zephyrhills, but the experience, Clanton says, has been “life changing.”

Horse therapy student
Sarah Clanton, blind since birth, gives commands to her horse, Cappy, at the Emerald M. Therapeutic Riding Center as owner and therapist Lisa Michelangelo, left, lends a hand.

Born blind and severely developmentally delayed, Sarah, now 14, spent her early years warehoused in an orphanage in Ukraine. Strapped to a bed for nearly 24 hours a day, she was never held or cuddled. When Clanton and her husband, Jon, adopted Sarah at age 5, Sarah was wearing infant-sized clothing. She could not walk or talk.

The Clantons tried unsuccessfully to educate Sarah through their school district’s homebound program. Next, they tried sending her to a small private school, but when one of her brothers, who is visually impaired and has cerebral palsy, got sick and had to be hospitalized, the family opted to homeschool both children.

Now, Sarah and her brother Sam both participate in the Gardiner Scholarship Program for students with unique abilities administered by Step Up For Students, which hosts this blog. The Clantons use the education savings accounts attached to their Gardiner Scholarships to cover the cost for both children to attend Emerald M, among other purchases, which they would not be able to afford otherwise.

“It was our last hope,” Clanton said, explaining that if this therapy, designed to make Sarah stronger, failed, the only alternative would have been purchasing a lift system on a track to support Sarah throughout the house. A bathroom renovation looked inevitable, another pricy item for a family of six whose sole breadwinner, Sarah’s father, is pastor of a small church and a prison chaplain.

The Clantons applied and were approved through Step Up For Students’ detailed process to use their Gardiner funds at Emerald M, which has been an authorized Gardiner service provider since 2016.

After each therapy session, Emerald M is required to submit a request for payment via Step Up’s direct-pay process. The secure platform routes the request to the parent for approval once staff determines the purchase meets state eligibility guidelines.

Step Up also has an online catalog of pre-approved educational products, such as curriculum materials, digital devices, and education software, that families may select. Families may also purchase items and services out of their own pockets and submit receipts and supporting documentation to Step Up for review for reimbursement.

That process includes an internal review committee with a special needs educator; regular input from a statewide Gardiner parent advisory council; and a long list of limits and prohibitions on certain expenditures and categories of expenditures. Reviewers examine each application to determine not only its eligibility but also its appropriateness for that child’s learning plan.

Step Up uses technology to look for evidence of attempted fraud or theft. For example, if a service provider’s reimbursement request is submitted from an IP address and the platform sees that the parental approval came from the same IP address, the anti-fraud staff is alerted to investigate.

Clanton says the therapies have been a godsend for Sarah over the past three years. Sarah, who was non-verbal when she arrived at the riding center and shied away from human touch, had to be carried to the riding ring by her brother.

Watch Sarah’s story.

Then she met Cappy, a dark bay horse with a gentle trot. Sarah learned how to circle the ring atop Cappy as a therapist gave her commands to give to the horse. As Sarah began experiencing the horse’s movements, which mimic the human gait, her balance and coordination improved. She learned how to orient herself in space.

Emerald M owner Lisa Michelangelo, a physical therapist, has observed Sarah making “incredible gains” this past year.

“She is able to walk best now with just one arm linked around someone else, and she is walking straighter and not showing the drastic signs of hip drop that she was before” Michelangelo said. “Her core, pelvis and hips continue to get stronger each week.”

Clanton has purchased a few other items with funds from her education savings account, such as a therapeutic swing and a lighted wall that makes water noises. Research shows both devices help calm children with special needs like Sarah’s and Sam’s.

Today, Sarah accompanies Clanton on outings to restaurants and to church. Slowly, Sarah is learning to be more social. And she’s learning to talk.

One of her most frequently uttered words is “horse.”

Lisa Buie is an online reporter for redefinED.

Does your child struggle at school? Step Up For Students can help

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.

Maloni Lewis turned her academic path around after receiving a Florida Tax Credit Scholarship managed by Step Up.

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.

Click here to apply for an income-based 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.”

Click here to join the 2021-22 interest list for the Gardiner Scholarship.

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.

Click here to view the 2020-21 Hope Scholarship award chart.

The transportation scholarship is worth up to $750 and can be used to attend any out-of-district public school with available space.

Click here to apply for the Hope Scholarship.

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.

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

By ROGER MOONEY

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

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

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

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

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

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

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

Bringing back the ‘personal’ trainer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bonding over Phineas and Ferb

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

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

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

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

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

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

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

So comfortable that Mikey walks on the treadmill at home.

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

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

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

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

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

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

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

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

Excited to work out

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

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

Reid stretches before a workout.

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

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

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

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

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

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

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

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

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

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

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

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

Plenty of school choices for children with special needs

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.

Joshua Sandoval and his mom, Nilsa.

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.

With the help of a Gardiner Scholarship managed by Step Up For Students, Joshua entered LIFT as a sixth grader during the 2019-20 school year.

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.

Click here to apply for a scholarship for children with certain special needs.

Click here to find a list of schools that accept the Gardiner Scholarship.

Valentina Guerrero, who has Down syndrome, attends Morningside K-8 Academy in Miami.

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.

Click here to find a list of all rare diseases defined by the National Organization for Rare Disorders.

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.

Moving education beyond the residential ZIP Code in Florida: Step Up provides choices

By ROGER MOONEY

School days meant a 5 a.m. wakeup call for Linzi Morris and her children so they could make the 40-minute ride across Tampa, Florida to their respective middle schools and high schools, passing more conveniently located options along the way.

Why?

Because Linzi wanted the best education opportunity for her six children.

“I looked at it as an investment, an investment in their future,” she said. “I can take the easier route, but I’m looking at it as I want them to get the best opportunity to do the best they can do.”

That’s the power behind the income-based and  special-needs scholarships managed by Step Up For Students. In Florida, parents are not tethered to their neighborhood schools even when personal funds won’t stretch that far. They have the flexibility to customize their child’s education and the freedom to send their child to a school outside their zone.

Saliyha and Qinniun are the youngest of Linzi’s six children to attend private schools with the help of income-based scholarships managed by Step Up.

Step Up offers the Florida Tax Credit Scholarship and the Family Empowerment Scholarship for those who meet the eligibility requirements found here, and the Gardiner Scholarship for those children with certain special needs who meet the criteria here.

Click here to apply for an income-based scholarship.

Click here to apply for a scholarship for children with certain special needs.

The scholarships are portable, too, meaning if the family moves to another part of the state, the scholarship moves with them to a participating school or approved providers and resources, as does their ability to choose the best education fit for their child.

Click here to find the list of schools that accept Step Up scholarships.

During the 2020-21 school year, nearly 100,000 economically disadvantaged schoolchildren attended one of the more than 1,800 private schools in Florida that accept Step Up’s income-based scholarships.

Since its inception in 2001, Step Up has funded 1 million scholarships.

Those scholarships were used at faith-based and non-denominational schools; schools that emphasized arts and science and schools designed for children with certain special needs.

Some parents favored small schools with smaller class sizes, so their child could have more one-on-one time with the teacher. Others sent their children to larger private schools, like St. Thomas Aquinas High in Fort Lauderdale, a Catholic school with a student population of more than 1,800.

Some parents found schools located close to home. Others, like Linzi Morris, set the alarm clock for 5 a.m.

Linzi sent all six of her children to Academy Prep Center, a private middle school in Tampa, because of its high academic standards. Her two oldest sons attended Jesuit High in Tampa, while her daughters and youngest son attended Tampa Catholic High.

Her three oldest children have graduated college. Another will graduate college in the spring. Her two youngest are still in high school.

The morning commute is long and slowed by rush-hour traffic. But to Linzi, it was worth the investment that comes with the freedom given to parents who uses the opportunity to choose the educational path for their child.

Roger Mooney can be reached at rmooney@StepUpForStudents.org.

Gardiner scholar is a Cystic Fibrosis pioneer: ‘We’re making science right now’

By ROGER MOONEY

Picture the Grand Tetons National Park in Wyoming with its majestic peaks and breathtaking vistas. Look closely and you might spot a moose under a bridge or a heard of bison off in the distance. Memories to last a lifetime, for sure.

Then 15, Faith Dunlap was there with her family in July 2018, ready to experience all the park has to offer.

Her favorite moment? Well, they did see a moose, and it was under a bridge. But that is hardly the biggest takeaway.

The lasting memory will be the phone call that reached the Dunlaps while they were in one of the park’s visitor centers. It was there where Faith learned she was accepted into a clinical trial for Cystic Fibrosis that had been approved earlier that year by the U.S. Food and Drug Administration (FDA).

Faith describes herself as “very active and outdoorsy,” which helps her
combat Cystic Fibrosis.

If successful, the treatment would be a life-changer if not a lifesaver for those battling the disease that attacks the body’s organs, namely the lungs.

“It was,” Faith’s mom Deana said, “a great day.”

And while the Dunlaps cut short the vacation and hustled home to Melbourne, Florida, that memorable day with the Grand Tetons as the backdrop was followed by more great days.

The trial worked.

“It really changed what I’m able to do,” said Faith, now 17. “I can go out in public and feel safer, pre-pandemic, of course. A cold is just a cold now. It doesn’t land me in the hospital for two weeks with bilateral pneumonia, which is nice.”

A Cystic Fibrosis advocate

A month after that transformative phone call, Faith had another life-altering moment. She became a Gardiner scholar through Step Up For Students. Today, Faith is a high school senior who has been homeschooled her entire life. The scholarship helps pay for her tuition and books at Eastern Florida State College in Melbourne, where she is dual enrolled.

At 18 months old, Faith was diagnosed with Cystic Fibrosis. Her life is a steady stream of medication and twice-daily treatments (once in the morning and once at night) that include a nebulizer, inhaler and a percussion vest, an inflatable vest that vibrates at a high frequency to loosen mucus in the lungs.

Until Faith began the clinical trial in August 2018, her routine included trips to the hospital. Lots of trips. In 2016 alone she was hospitalized eight times with the average stay of two weeks. That’s one of the main reasons Deana and her husband, Rich, decided to home school their three children – to control the environment around Faith as much as possible.

For Faith, wearing a mask was a part of her life long before the COVID-19 pandemic.

Facemasks, hand sanitizers and social distancing were the norm for Faith long before anyone heard of COVID-19.

“When you have CF, every cold, not only do you get sick and get a lot sicker and stay sicker longer because it turns into pneumonia,” Deana said. “But CF is a progressive disease and every illness you get does some amount of permanent lung damage, so the more you have, the faster the lung damage builds up and the earlier you need a lung transplant.”

Faith is an advocate for opt-out organ donation, where donating is automatic unless a person requests otherwise. In the United States, people have to opt-in to have their organs donated. Faith explained why opt-out is so vital in a video she made last year for one of her college classes.

“In the CF community, people need a lot of organ donations, especially lung donations and liver donations less frequently, but lung donations are the big thing,” Faith said. “A lot of times there aren’t enough organs donated for everyone on the list.”

Making science

Cystic Fibrosis damages organs, namely the lungs and digestive system, by attacking the cells that produce mucus, digestive juices and sweat. These fluids become thick and sticky and clog passageways, usually in the lungs and pancreas.

It is an inherited disease, which can be caused by any one of a 1,000 gene mutations in the parents. Faith inherited a mutated gene from each of her parents. Having two is what qualified her for the clinical trial.

The life expectancy of those with Cystic Fibrosis increases with the advancement of treatments. According to a 2019 article in Medical News Today, prior to the 1980s, half of those with the disease did not reach their 20s. Today, most Cystic Fibrosis patients live into their 40s and lead active lives.

That’s why the clinical trial was important to Faith and to the Cystic Fibrosis community. If the treatment – a triple combination of drugs – worked, who knows how far they can extend the life-expectancy?

“(My future is) much less bleak,” Faith said. “We don’t actually know, because I’m in the first generation of patients to have access to these drugs. We’re making the science right now. We just don’t know, because there aren’t adults who got on these as teenagers and grew up with them. We’ll figure out what happens. It’s changed so vastly because of the access to this new life-saving medication that we don’t really know for sure. We just know it’s a lot better and has the potential for us to live normal lives.”

Faith (right) was visiting Grand Teton National Park with her family when she learned that she was accepted into the clinical trial. She is pictured here with her sister Grace (left) and brother William.

Being accepted to the trial was great news for Faith and her family. But there did remain one mystery: Was she going to be in the group that received the triple-combo of drugs? Or was she going to be in the placebo group?

“I’ve always followed the ‘hope for the best, prepare for the worst’ scenario,” Faith said.

She had her answer one month into the treatment when the result of a pulmonary function test was 107. Her results were normally in the 80s.

“I thought it was a fluke, so I did it again,” Faith said.

The result was above 100. She recalled one occasion when her result from that test reached triple digits, and that was when she was 7.

“I was in shock,” she said.

Faith knows of Cystic Fibrosis patients in the clinical study whose health improved so much they are no longer on the list for a lung transplant. In 2019, the FDA approved the triple combo drug for nearly all who have Cystic Fibrosis.

“This drug has been such a miracle for them,” Deana said. “It’s really changed the entire CF community as long as you qualify for it. But not everybody who has CF qualifies for it. It’s mutation-specific.”

Workout warrior

Keeping the lungs as healthy as possible is a key to combating Cystic Fibrosis. It helps to be as active as possible.

Faith is as active as possible.

She runs half-marathons (13.1 miles). She ran her first when she was 12. She has run nearly a dozen since.

She kayaks and surfs. She hikes and camps with her family.

Faith paddleboards in the Atlantic Ocean, which is 15 minutes from her home. She was preparing for the Crossing for Cystic Fibrosis in June, where participants cross the Gulf Stream from Bimini in the Bahamas to Lake Worth, Florida on standup paddleboards. It’s an 80-mile journey that Faith expected would take 15 to 18 hours to complete. The event was canceled due to the pandemic but is rescheduled for June 2021.

Faith was named the CF Workout Warrior for June by the Team Boomer, Fighting Cystic Fibrosis. The charity is run by former NFL quarterback Boomer Esiason, whose son, Gunner, has Cystic Fibrosis.

“I’m very active and outdoorsy,” she said.

Faith wants to be a marine biologist. She works part-time at the Florida Wildlife Hospital and Sanctuary near her home.

She loves penguins and dolphins.

“I have a particular soft spot for marine mammals,” she said. “I also love sharks and think that they are vastly misunderstood.”

Thanks to new medication that Faith helped pioneer, her future is, as she said, “less bleak.” She looks forward to a long, normal life.

“We had hope that it was going to change her life,” Deana said. “I don’t think any of us fully expected it to be as good as it is.”

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

Step Up For Students partners with NLP Logix to build next generation ESA platform

Step Up For Students was founded to empower families to pursue and engage in the most appropriate learning options for their children, with an emphasis on families who lack the information and financial resources to access these options. Over the years, Step Up has developed internal systems and procedures to administer these scholarships, which disproportionally benefit minority children and families, but now they are expecting exponential growth in demand.

“Even before COVID,” said Doug Tuthill, President, Step Up, “we were expecting to grow from administering $700 million in scholarships to over $1 billion. But now, families are having to supplement their children’s education at home and/or through neighborhood pods, which has increased the need for parents to have access to more scholarship funds, and more flexibility in how these funds are spent.”

To support their mission and growth, Step Up has turned to NLP Logix, a Jacksonville, Florida-based machine learning and artificial intelligence company, to integrate and build the platform the parents can use to manage their children’s education. The platform is incorporating high levels of artificial intelligence to provide such things as course recommendations, educational product purchase recommendations, charter school options and other applications to help users interface with their scholarship benefits.

“We are very proud to have been selected by Step Up For Students to partner in this endeavor,” said Ted Willich, CEO, NLP Logix. “Having an opportunity to support transforming the K-12 education system in America is something we could have only dreamed of when we started NLP Logix ten years ago.”

Step Up For Students and NLP Logix expect to launch the platform in December of 2021 with an extensive roadmap of enhancements to come in the following years.

The platform will first be used by parents and students within the State of Florida who are enrolled in the five scholarship programs administered by Step Up: Florida Tax Credit Scholarship (FTC) and the Family Empowerment Scholarship (FES) for lower-income families, The Gardiner Scholarship for children with certain special needs, the Hope Scholarship for public school students who are bullied or victims of violence and the Reading Scholarship Accounts for public school students in third through fifth grade who struggle with reading.

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