By GEOFF FOX
Doctors didn’t expect Ben Zanca to live very long. Even before his birth, fluid was drained from his lungs every week for eight weeks until he was delivered.
Ben’s parents, Ann and Tony Zanca, were told Ben may need a chest tube after his birth and possibly surgery.
“But, when they put the (chest) tube in all the blood vessels shut down,” Ann Zanca said. “It’s called persistent pulmonary hypertension, which not many people survive at that age. He was transferred to Arnold Palmer Hospital for Children (in Orlando) where there is a heart-lung bypass machine.”
Things looked bleak.
“They told us he was going to die,” Tony Zanca said. “They called in a priest and everything.”
Fortunately, a nitric oxide treatment worked and Ben did not have to go on the lung-heart bypass machine.
“They said they’d never seen a baby as sick as Ben pull through,” Ann Zanca said.
Unfortunately, Ben’s medical struggles and the family’s worries were only beginning. Problems with his blood vessels went misdiagnosed for more than 12 years.
About 18 months ago, Ben, now an outgoing 14-year-old who loves camping, was finally diagnosed with CLOVES syndrome, an extremely rare disorder characterized by tissue overgrowth and complex vascular malformations. Worldwide, less than 200 cases of CLOVES syndrome have ever been identified, according to information from Boston Children’s Hospital.
Because of CLOVES, Ben is at risk for developing blood clots and has regular doctor visits to monitor his vascular health.
That’s not his only issue. Shortly after he was born, Ben was diagnosed with cerebral palsy. He also has been diagnosed on the autism spectrum and deals with epilepsy and asthma.
Until the current school year, he attended public school in Altamonte Springs, Florida, where he lives with his family, including 9-year-old sister Megan. Tony Zanca works in the parts department of a local auto dealer and Ann works part-time jobs as a computer programmer analyst and as an advocate for parents with children who have an Individualized Educational Plan.
Ben was not thriving at the public school.
“It’s not that they didn’t care, but he wasn’t going anywhere; he was going backward,” Tony Zanca said. “Teachers have their hands tied with all the new testing and all they did was quizzing for the test. There was no hands-on learning, which is what Ben thrives on.”
For years, Ann Zanca wanted to enroll Ben in the nearby Pace Brantley School in Longwood, but the family couldn’t afford it. Established in 1971, the school has always been geared toward students with learning issues. It is situated on nine wooded acres that offer a serene setting.
Eventually, a friend told Ann Zanca about the Gardiner Scholarship for children with certain special needs; the scholarship is managed by Step Up For Students. In 2016, the Zancas applied for the scholarship – which can help families pay for tuition at partner schools, approved therapists, specialists, curriculum, technology or even a college savings account – and Ben was accepted.
“Ben is very social and I don’t want him to miss out on the experience of school,” Ann Zanca said. “They have a well-rounded curriculum and lots of extra-curricular activities. They even have a prom. I was also concerned if it would be academic enough. Of all the places I knew of or visited, it seemed to be up to standards.
“It seems to challenge him but he doesn’t seem overwhelmed. There are people there to help him. We do have a private tutor for math. His teacher tells me he’s definitely challenged in pre-algebra, but he’s doing well. That makes me happy. The goal is that he’ll be able to get a regular diploma and either go to vocational school or college afterward.”
Now in eighth grade, Ben enjoys going to school. Due to his medical issues, he often has doctor’s appointments during the school day. Before, his mother said, he would sometimes call from school to see if she could pick him up early. Now, he doesn’t want to leave Pace Brantley’s campus.
While he has historically struggled with reading, English is now one of his favorite subjects, along with math.
“We were learning substitution, the three ways of substitution in math,” Ben said after a recent day at school. “That’s in algebra; it’s coming along.”
Of his favorite times of day is FLEX (Focused Learning Experience) Time, when students can choose a subject of their own to explore after lunch. Activities can include arts and crafts, learning a foreign language, tennis, yoga, tai chi or taking virtual field trips on a Smartphone.
On this particular day, Ben chose art.
“We were drawing different types of flags and what they look like,” he said. “I drew the Florida flag.”
Jennifer Portilla, Ben’s reading and language arts teacher, said she has seen him flourish since the school year began.
“He seems really comfortable and he’s willing to take risks. He’s not afraid to not be successful” in class, she said. “Academically, he’s making strides. He’s a pretty good writer for his age. He is able to write an essay and he doesn’t seem to struggle as much as at the beginning of the year.”
One of Ben’s other interests is the Boy Scouts. Despite his son’s many medical obstacles, Tony Zanca said he tries to treat him “like any other boy would be treated.” On a recent Boy Scout camping trip, he allowed Ben to paddle on a canoe with another scout.
“Years ago, I would never let him out in canoes down the river without me,” Tony Zanca said. “But it’s like I told him, ‘I’m going to have to start letting you do things by yourself, make your decisions and not do things wrong’. Someday soon, I’ll let him go on a (Boy Scout) camping trip by himself.”
The Zancas say that while Ben is obviously aware that he has medical issues, he doesn’t dwell on them. Because CLOVES can cause blood clots (Ben has had a few), they constantly monitor how he’s feeling. Now that he’s at Pace Brantley, which has a nurse on campus, his parents are more at ease.
“The scholarship was huge, like the answer to our prayers,” Ann Zanca said. “His self-confidence has increased tremendously. It’s a lot of hands-on learning. He made a car out of a Coke bottle and started telling me about Newton’s Laws of Motion. His self-confidence has increased tremendously.”
Reach Geoff Fox at Gfox@sufs.org.
A licensed speech therapist, Stacey Thomas interned as a University of South Florida graduate student at Morning Star School, a small Catholic school in Pinellas Park serving students with special needs.
“When I was there, I knew that school was special,’’ Thomas said.
Years later, the wife and mother of three returned to Morning Star, but this time as a parent. Thomas’ eldest child, Liam, has Down syndrome. He longed to attend a school where he could do the things other kids did like sit at their own desk and eat lunch in the cafeteria with friends. But Liam needed special services like one-on-one instruction and speech therapy. Thomas, featured recently with Liam in our student spotlight, immediately thought of Morning Star.
She just wasn’t sure her family could afford tuition until Liam qualified for the Gardiner Scholarship, formerly Personal Learning Scholarship Accounts, through Step Up For Students. The annual scholarship, on average about $10,000 per student, is awarded to families based on their children’s certain disabilities and can help cover costs for tuition, curriculum, therapies and other education needs.
“It literally has been the hugest blessing,’’ said Thomas, who lives in Tampa with her husband, Trey, Liam, 9, and his two siblings, Sydney, 8, and Laine, 3.
With Liam making huge learning gains during his third-grade year at Morning Star, Thomas agreed to share with us her strategy on finding the school that worked best for him:
Do you have some words of wisdom to share with other parents and caregivers, or do you have an idea for a story? Please contact Sherri Ackerman, public relations manager, at sackerman@StepUpForStudents.org
By TRAVIS PILLOW, redefinED
Editor’s note: This story originally appeared on the redefinED blog on Jan. 21. The blog is hosted by Step Up For Students, and is an education blog dedicated to recasting the way we perceive public education.
With Gov. Rick Scott’s signature, Florida’s newest educational choice program has a new name, and will be able to serve more students.
Legislative leaders joined Gov. Rick Scott after he approved legislation aimed at helping people with special needs.
Flanked by Senate President Andy Gardiner and his family, House Speaker Steve Crisafulli, and the lawmakers who sponsored the legislation, Scott approved SB 672 on Jan. 21 during a ceremony in the governor’s office.
The new law increases funding for the Gardiner Scholarship program by roughly a third, to $71.2 million. It also allows more 3- and 4-year-olds to use the education savings accounts for students with special needs, and makes them available to children with muscular dystrophy and a wider range of students with autism.
The scholarships, previously known as Personal Learning Scholarship Accounts, allow families to pay for school tuition, therapy, curriculum and other education-related services of their choice. Step Up For Students, which hosts this blog, helps administer them.
Earlier in the day, Gardiner, whose family provides the namesake for the scholarships, praised another aspect of the law, which expands programs for special needs students at state universities. Scott also approved HB 7003, aimed at helping more special-needs students join the workforce.
In a statement, Gardiner said the new laws will help make Florida “the state where all people have access to an education suited to their own unique needs and the opportunity to achieve their career goals.”
“The complete cradle-to-career pathway to economic independence will make a significant impact on the lives of individuals with unique abilities and their families for generations to come,” he said.
Patricia Levesque, the executive director of the Foundation for Florida’s Future, said in a statement that the new laws never would have come about without advocacy from parents. (Gardiner has a son with Down syndrome.)
“It wasn’t all that long ago when students with disabilities were shunned in classrooms; their needs ignored and their abilities dismissed,” Levesque said. “Every time I see a child with unique abilities, behind him or her I see a parent with unique passion and commitment.”
Step Up For Students Family and Community Affairs (FCA) team recently began hosting “Coffee and Conversations” events with Personal Learning Scholarship Accounts (PLSA) recipients’ parents, kicking off the program on Sept. 30 in Tallahassee, the state capital.
Since then, the team has met with parents in St. Petersburg and Jacksonville, and plans to bring the program to other areas throughout Florida.
The PLSA program, which provides funding for children with certain special needs for private school, approved educational tools, therapies and even for college savings, was created by the Florida Legislature in 2014. On average, eligible students receive about $10,000 annually.
The goal of the “Coffee and Conversations” events is for FCA staff to get feedback from PLSA parents on the program including on eligibility and reimbursement processes, use of funds, and for parents to network with other local parents in their area.
“Using that feedback, we will work to make the program better,” said Sara S. Clements, FCA’s director of external affairs. “There is nothing more valuable than hearing directly from parents who are using this program. We are thankful for parents giving us feedback on ways to improve our internal processes, as well as ideas to expand the program legislatively in the future.”
The parent feedback has been positive, Clements said, adding that she said one parent took to Facebook to express her gratitude.
“Loved [Coffee & Conversations]. I got answers to questions, and had the opportunity to meet wonderful staff and fellow parents,” the mother wrote.
The FCA team also uses these meetings as an opportunity to educate parents on the importance of the legislative process, and sharing how they can support the PLSA program by speaking to their elected officials.
The FCA team is hosting additional “Empowerment Trainings” in as a follow-up to Coffee & Conversations, where the focus will be more on parent advocacy, including training on how parents can share their stories with lawmakers and other elected officials.
Editor’s Note: This post originally ran Oct. 23 on the redefinED blog, which is hosted by Step Up For Students, and is an education blog dedicated to recasting the way we perceive public education. Travis Pillow attended the Foundation for Excellence in Education’s annual policy summit in Denver earlier this week.
DENVER – There were more than a few wet eyes in a room full of education reform advocates when Katie Swingle told her story of finding the right school for her son.
After learning a traditional public-school setting wouldn’t work, she found a specialized private school that could help her son overcome autism, dyslexia, and speech apraxia. She now has hope he’ll return to public school one day.
On Thursday, Swingle, who has also wowed Florida legislators with her story, said that as states expand educational choice for students with special needs, other parents’ stories might be different from hers.
While she used a Personal Learning Scholarship Account through Step Up For Students to send her son to a school that gave him the support he needed, she said other parents might send their children to a more traditional school, but use their education savings accounts to pay for therapies like applied behavior analysis, or other educational expenses.
“Every kid needs something different,” she said during a discussion of education savings accounts at the Foundation for Excellence in Education’s annual policy summit in Denver. “We needed Woodland Hall [Academy].”
As more parents start using educational choice accounts to pay for things beyond school tuition, it raises other questions — and possibilities. It’s hard enough to provide a clear, agreed-upon measure of school quality. But it might be even harder to attribute test scores, learning gains or graduation rates to therapeutic programs, tutors, or groups of parents who purchase curriculum and help their children learn at home.
Adam Peshek, school choice policy director for the Foundation of Excellence in Education, said test scores might help parents track the progress of their children, but to judge the quality of various education providers, states might need to try something different.
“Have parents be required to rate their experience with vendors,” he said. “Let’s use what they know to create real accountability.”
Swingle said many parents, especially those with special needs children, are making active decisions about their children’s education already.
“We have to put more faith in parents,” she said. Not every parent might have the expertise to comparison-shop among curriculum providers or drive across town to check out schools. “But that’s where we have each other. The poorest, least-educated autism mom is on Facebook.”
The challenge, then, is giving these parents the tools to make the most informed decisions possible.