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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.

Step Up ranked 21st in Forbes annual list of top 100 charities

By ROGER MOONEY

Step Up For Students continues to rank among the top 25 nonprofits in the country, coming in at 21st in Forbes’ list of America’s Top 100 Charities 2020.

Step Up, a Florida-based scholarship funding organization serving more than 120,000 students annually, was No. 1 among education charities.

This is the fourth year that Step Up has been included in the Top 25 of Forbes’ 22nd annual list of America’s top charities.

“This honor is bestowed on our organization because of the amazing generosity of our donors who believe in our mission of delivering educational opportunities to Florida’s most vulnerable students,” said Anne Francis, Step Up’s vice president of development. “This ranking is particularly special this year because we just celebrated the delivery of our 1 millionth scholarship. The children whose lives are changed by these scholarships are the heart and soul of Step Up.”

The nonprofits that comprise the Top 100 received $49.5 billion in donations during the fiscal year that ended June 30, 2020. That is 11% of the estimated $450 billion raised by the more than 100 charities in America.

Step Up received $618 million in donations during the 2019-20 fiscal year.

In addition to the recognition from Forbes, Step Up received a coveted four-star ranking from Charity Navigator, the nation’s top charity evaluator. It is the 14th time Step Up received Charity Navigator’s highest ranking.

In a letter to Step Up, Charity Navigator President Michael Thatcher wrote, “Attaining a 4-star rating verifies that Step Up For Students exceeds industry standards and outperforms most charities in your work area.”

Step Up ranked 18th in the Chronicle of Philanthropy most recent list of Top 100 nonprofits and has received GuideStar’s Platinum Seal of Transparency.

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

Time to nominate your students for Rising Stars Awards

By ROGER MOONEY

Do you have a Step Up For Students scholar who made significant improvements academically since attending your school?

How about a Step Up student who consistently displays outstanding compassion, perseverance and courage?

Or one who excels in academics, the arts or athletically?

Now is the time for school leaders to honor those students for Step Up’s annual Rising Stars Awards program, scheduled for Feb. 25, 2021. This year’s event will be held virtually from 6:30 p.m. to 7 p.m.

Another change this year due to COVID-19 is we are limiting the categories to student only. Next year we hope to honor parents and teachers again in person.

“Step Up For Students celebrates our outstanding scholarship students every year through our Rising Stars Award ceremonies across the state. We had to cancel the 2020 celebration due to COVID-19, so we are excited to announce that we will be back in 2021 with a virtual celebration!

“While we wish we could be together in person, we promise that this live virtual event will be an exciting and special way to honor our amazing scholarship students and the great work they are able to do in their chosen schools,” said Lauren Barlis, Step Up’s senior director of Student Learning & Partner Success.

School leaders can nominate up to three total students in the following categories:

  • High Achieving Student Award. Students who excel in academics, arts or athletics.
  • Turnaround Student Award. A student who struggled when they first attended your school and has since made dramatic improvements.
  • Outstanding Student Character Award. A student who demonstrates outstanding compassion, perseverance, courage, initiative, respect, fairness, integrity, responsibility, honesty or optimism.

Click here to nominate your students.

The deadline for nominations is Dec. 4.

Before making nominations, please have all necessary information available, including school name, school DOE number, each nominee’s contact information (name, phone number, email address, Step Up Award number). Please include a short description of why each person is being nominated.

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

Love of learning returns for this student with Down syndrome

By LISA A. DAVIS

On most Friday mornings 14-year-old Matthew Mezzei springs awake in the 5 o’clock hour, excited to start his school day. It’s the earliest he rises. His inner alarm clock alerts him to a special day in his family’s home in rural Pasco County:

“Fun Friday!” his mother, Lisa Mezzei, said. “It’s a reward at the end of a busy week.”

On this particular Friday, it’s 10 a.m., and Matthew, a bespectacled boy with a bright smile and a love for baseball, excitedly greets a visitor to his home in Zephyrhills. His house is also his classroom. The day’s schedule is laid out on the kitchen counter. It includes several educational centers such as science, math, reading and even an obstacle course for agility exercises. They use much of their home’s shared living space as a classroom, and Fun Friday consists of educational game centers rather than straight curriculum.

“Centers help me to remember,” Matthew said.

Matthew was born with Down syndrome. His education began at his neighborhood school where he had an Individualized Education Program, known as an IEP, which is essentially a guide for children with certain special needs to reach their educational goals more easily. Matthew was in a general classroom and had great support, but by first grade something changed.

“When he was 7, he started not understanding what was being asked of him on tests,” his mother recalled. “He kept saying he felt tricked, and he started withdrawing at school.”

That’s when Mezzei knew she had to do something, because her happy-go-lucky boy was now often sad. She began researching her options and realized private and charter schools were not a good fit for Matthew either. Then she discovered the Gardiner Scholarship for children with certain special needs managed by Step Up For Students. The scholarship program was new at that time. Home school seemed like the best option, and at an average of $10,000 per student annually to pay for curriculum and other approved learning tools, she added full-time teacher to her role. She decided it was best for her son to repeat first grade.

“Because of the Gardiner Scholarship, it wasn’t as daunting (to try home schooling),” she said. “The timing was so fortuitous. We had been wanting to withdraw him from the school, but we had no other options. At least the financial part wasn’t so scary.”

She used the scholarship to purchase learning aids for Matthew from places like Lakeshore Learning and Rainbow Resource. She bought science experiment kits, agility equipment, math games, chapter books, Handwriting Without Tears curriculum and more. They have used the funds for speech and occupational therapy.

Home schooling made all the difference, Mezzei said.

“Within six months, not only was his personality back, his confidence was back, and his love of learning was back,” she said.

Matthew loves learning about geography and the world around him. He has been making great strides since becoming a Gardiner scholar through Step Up For Students.

He made great strides, and his reading comprehension increased substantially.

His occupational and speech therapists agree that Matthew, now a seventh grader has made great progress since being home-schooled.

“The Mezzei family is a therapist’s dream family,” said Kelly Partain, Matthew’s occupational therapist. “They truly take all recommendations to heart and actually implement them, which makes for excellent outcomes. Matthew continues to exceed his goals as he has an excellent attitude and works hard every day at home while being home-schooled, at therapy, or on the ball field.”

Added his speech therapist, Lindsey Leeson, who works at the same clinic as Partain, “He has a big heart and is always looking to help other kids in our clinic and tells us how much he loves and appreciates us every session. “He’s a gem.”

Like most things, his therapy sessions moved online in March, but he continues to make strides.

Matthew’s speech is often hard to understand for those who first meet him, but his glowing personality and love of learning come shining through.

“This scholarship is life-changing and allows us to educate Matthew to the fullest extent of his abilities,” Mezzei said. “Our biggest hope is for him to be happy and successful in life, and as you know, we believe unequivocally this is his best path. … Matthew is so proud of what he learns and knows.”

Lisa A. Davis can be reached at ldavis@sufs.org.

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

By ROGER MOONEY

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

“Happy tears,” she said.

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

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

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

Evelyn Hopstetter

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

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

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

Michele called the scholarships a “godsend.”

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

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

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

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

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

Triston Hopstetter

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

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

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

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

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

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

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

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

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

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

The Hopstetters, Thanksgiving 2019.

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

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

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

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

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

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

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

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

Brave warrior, inspiring model flourishes with scholarship

Editor’s note: This story was originally posted on June 28, 2018. We are taking a look back at some of our scholarship stories from the past. Valentina Guerrero continues to thrive using the Gardiner Scholarship. To sign up for our philanthropic newsletter, please click here

By DAVID HUDSON TUTHILL

Her name means “Brave Warrior” in Spanish.

That might not conjure up the image of a 6-year-old girl with blonde hair, glasses and a smile so bright she became the first person with Down syndrome to become a main model for a major fashion brand.

Born with Down syndrome, Valentina Guerrero, started modeling at 9 months old.

But, Valentina Guerrero always defies expectations.

The oldest child of Cecilia Elizalde and Juan Fernando Guerrero, Valentina was born Sept. 16, 2011. Her parents didn’t learn Valentina had Down syndrome until after her birth.  Each year, roughly 6,000 children in the U.S. are born with the genetic condition according to the Centers for Disease Control.

A Gardiner Scholarship for children with certain special needs has helped Valentina shatter incorrect assumptions many people make about people with Down syndrome. Step Up For Students helps manage the scholarship.

“I realized how incredible individuals with Down syndrome are,” Elizalde said. “They’re so evolved on a spiritual level, and we have so much to learn from them. But we don’t hear enough of that. We hear outdated comments about their potential. I wanted to help change that perception.”

The family, including younger brother Oliver, 3, lives in Miami. Other family members remain in their native Ecuador.

Valentina was a few months old when her parents realized some of the challenges she could face. They soon had her working with occupational, physical and speech therapists.

Adriana Tilley, an occupational therapist with 33 years of experience, has been working with Valentina since she was a baby.  Tilley says Elizalde and Guerrero are deeply involved with their daughter’s care, which has had a huge influence on her development. The Gardiner Scholarship helps pay for the care.

“The parents have been incredible and a huge member of the team,” Tilley says. “Valentina is like any other kid, with some limitations. But, we all have limitations.”

Tilley’s six years of work with Valentina have helped the child make tremendous strides in her personality. She constantly is asking how other people are feeling. Tilley marvels at the young woman she’s helped nurture over the past six years.

“She’s met all her milestones and is doing great,” Tilley says. “Now she is learning how to do everything by herself. I’ve loved working with her and learning from her family.”

Even as a baby, Valentina began shattering stereotypes.

She was 9 months old when she began taking the modeling world by storm. Family connections led her to European fashion designer Dolores Cortés. By 2013, she was the main model for the company’s children collection DC Kids USA 2013.  In the ensuing years, Valentina has been featured in a plethora of media outlets, including People Magazine, Down Syndrome World and MTV Tres. She also has modeled for brands such as Walmart, GAP, Toys R Us and Carter’s, the children’s clothing company.

A Gardiner Scholarship for children with certain special needs has helped Valentina Guerreno shatter incorrect assumptions many people make about people with Down syndrome.

Her accomplishments resonated as far away as her family’s native Ecuador – to the extent that the country’s former vice president, Lenin Moreno, wrote Valentina a letter, calling her an inspiration. Moreno is now Ecuador’s President.

“We didn’t take the fame too seriously,” says Elizalde, a former television producer, consultant and music show host on the Spanish-language PBS station V-me. “I saw it as a platform for us to communicate an important message. It was a little hectic having to go from therapies to having cameras all over. It was kind of surreal.”

Social media has played a major role in Valentina’s fame. Thanks to her mother, there are countless photos and videos across Facebook, Instagram, Twitter and YouTube, documenting her life and various activities.

Elizalde also recently began a Spanish language parenting channel on YouTube. She hopes to pass on to other families some of the techniques and therapies that have most helped her family.

She is a firm believer in the adage that it takes a village to raise a child such as Valentina, which is why the family feels so fortunate to be able to choose the right educational path for her.

Valentina enrolled in a three-year pre-K class at Morningside K-8 Academy in Miami. By her third year, she was in class with over 20 kids, one teacher, and an aid. Despite the class size, and with Valentina the only child in class with Down syndrome, the school was largely successful in meeting her needs. When Kindergarten rolled around however, the family toured different school options.

Elizalde was worried about finding the right setting to meet Valentina’s needs. A friend recommended the family check out Von Wedel Montessori School in Miami. As soon as the family walked in, they knew they had found the perfect place for Valentina and her brother, Oliver.

At Von Wedel, the family creates an Individualized Education Plan, or IEP, in conjunction with the principal, teachers and with input from Tilley. Valentina thrives in that setting, and Elizalde loves the philosophy of Montessori – to allow children to develop at their own unique pace, to work independently, and embrace the joy of self-discovery.

“None of her peers notice her disability,” Elizalde says. “They acknowledge that we are all different. It’s a really beautiful environment for her.”

A typical week for Valentina is full of activities. On Monday, there’s swimming lessons after school lets out at 3 p.m. She has occupational and speech therapies on Tuesday. On Wednesday, it’s ballet class. By Thursday, she’s back in the pool. Friday is usually a day to relax and spend time with some of her friends or fit in a modeling gig. Valentina loves going to the playground and to different museums. There is also a standing weekly Friday night dinner with family.

Valentina says she wants to be a chef when she grows up. She likes to play with her kitchen set. Her mother sees a different path, however.  She thinks Valentina is a natural teacher.

Nearly every day at home, Valentina lines up her stuffed animals and reads to them and leads them in a class. The process goes on for a couple hours. Her younger brother Oliver is the only non-stuffed attendee, and she has helped him learn to speak English.

Six years old and with a life so fast paced, it’s hard to imagine the higher levels Valentina Guerrero will reach. With the help of her school, the boundless energy of her mother, and their family’s mission to spread positivity about individuals with Down syndrome, her capacity is endless.

“She’s a warrior,” Elizalde says. “When she has a goal, she fights for it and achieves it.”

Visit Cecilia Elizalde’s YouTube Channel.

David Hudson Tuthill can be reached at dhudson@sufs.org.

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