By JEFF BARLIS
OCOEE, Fla. – The young teacher called, tears choking her words. She wanted to quit.
On the other end of the line was Rose Theagene, horrified but not surprised. She knew her youngest son, Darryl Dutervil, was on the verge of expulsion due to escalating behavior problems in first grade at his neighborhood school.
“He threw a chair at the teacher, and it almost hit another student,” she recalled. “He was pushing and hitting kids. Parents were complaining. It was very bad. At the meeting, I just said I would take Darryl out of the school to save everyone the trouble.”
Rose had her theories about what was behind Darryl’s problems. He had been diagnosed with ADHD and the medicine was making him feel sick. At home, she said, his behavior was fine but only because she spoiled him.
After years of working in customer care for a health care company and attending school as a single mother of two, Rose became a licensed practical nurse two years ago, around the time she withdrew Darryl. A fellow nurse told her about the Florida Tax Credit Scholarship, which helps lower-income families with private school tuition.
It took almost two years and an ill-fated move to Daytona Beach for work reasons, but in January 2017, Rose finally found a school – Glad Tidings Academy – where Darryl and older brother Stacey Singleton were at home.
The teacher who went beyond
Parents and students alike love Andrene Donaldson. She’s fair and compassionate, but she can be tough and blunt, too. A former public school teacher in Jamaica, her thick accent floats through the classroom like music. But all it takes is one look, and the students know she’s serious.
“She has so much fun with them that they instantly know when she’s not happy,” said Glad Tidings principal Amanda Bleggi.
Donaldson was Stacey’s sixth-grade teacher last year. He was a breeze. Good student. Shy, honest, and respectful.
This year, Donaldson teaches Darryl in third grade. Within two days, she, too, thought she might give up.
Darryl was angry and aggressive all the time. He screamed. He cursed. He never had anything nice to say to his classmates. He would snap and toss chairs. Once, he pushed Donaldson.
“Last year,” he said meekly, “was challenging.”
Donaldson made it a point to always respond with patience, understanding, and soft tones.
“He expected me to be mad at him, but I just never treated him the way he expected,” she said. “When he was negative, I was positive.”
One Saturday, Donaldson’s husband bought her a success board for Darryl to track his achievements. They started small. Two hours a day of good behavior slowly turned into one full day a week. She rewarded him with certificates, snacks, pencils, erasers, and sometimes something sweet.
“I couldn’t believe the amount of work and effort she put into just one child,” Bleggi said. “But he started to see he could succeed. It was that board.”
It was a matter of trust, too.
“When I’m angry, she calms me down,” Darryl said. “She’ll take me outside to take deep breaths, and then she lets me come back in and try again, over and over again. If I make her mad, she still loves me.”
The principal who understood
It was Bleggi, a Long Islander who became a customer relations expert in her previous career with Disney, who recognized that academics were quietly fueling Darryl’s loud outbursts.
“When he came to us, he was failing everything,” she said. “He had no confidence in himself. He didn’t believe he could do his work. There were little things he couldn’t understand, so he would get frustrated and embarrassed.”
There were countless incidents, several worthy of dismissal. But Bleggi dug in her heels.
“He should have been expelled, but I knew that wouldn’t do anything,” she said. “He would just be shoved along.”
She called Rose in for a talk and assured her that Darryl wasn’t going anywhere. Rose was taken aback. She had expected the opposite.
“When she said that, it gave me a chance to breathe,” Rose said. “They are fighting for him.”
The mom who pushed
In her new job, Rose was adjusting to working 12-hour shifts – at night. She got off at 7 a.m. and still made sure the kids got to school on time.
But every morning by 10, she expected a call from the school about Darryl. Desperately tired, she tried bribing him with ice cream and pizza.
“Just let Mommy sleep until 3 o’clock,” she pleaded.
Last fall, the calls stopped coming. Donaldson was using an app to communicate with parents. It made a ping on Rose’s phone whenever she got a message. That noise used to wake her up at 10 a.m. as well, but it was gradually replaced with photos of Darryl at work and at play, updates to his success board, and other encouraging notes.
It wasn’t an overnight transformation, but the extra communication helped. Rose got more involved during the day. She was getting fewer calls and pings, but she insisted on coming in to talk to Darryl every time.
It felt like she, Donaldson, and Bleggi were on the same page. Their patience became her patience. Their positive message hers.
She marveled at Darryl’s improvements this year and shined proudly when she saw A’s, B’s and one C on his report card.
“Darryl would wake up early, ready to go to school,” she said. “He would say, ‘Mommy, I’m going to have a good day today. You can sleep. You don’t have to worry.’ That’s when I knew the changes were real.”
The brother who led
At Glad Tidings, big brother Stacey was worried and afraid Darryl would get expelled and end up in a bad school. But at their neighborhood school, Stacey felt the sting of being lumped in and labeled.
“I heard teachers say, ‘There goes Darryl’s brother,’ ” Stacey said. “That’s why I didn’t want him to be bad, because it also reflects on me and my family.”
Darryl idolizes his brother. He wears his hair in the same kind of flat top with shaved sides as Stacey. They’re both stocky. They have the same cheeky grin. Stacey knew he could get through to Darryl. At Glad Tidings, he checked on his brother regularly.
“He looks after me,” Darryl said. “Even more than my mom.”
Stacey made a ritual of guiding his brother, made him his responsibility.
“Every morning, I gave him a pep talk of what not to do and what to do,” he said. “If there’s a person bothering you, just ignore him or tell the teacher.”
Stacey could see how those long, confidential talks really helped. Rose also felt it was a turning point when Darryl realized he was embarrassing his brother.
“I’m proud of him,” Stacey said. “I tell him ‘Good job’ a lot now, and I let him play with my video games more often.”
It’s always been about attention for Darryl, but now he feels the difference between positive and negative.
The more marks he got on his success board, the more often he went to Bleggi’s office to show her.
“By December,” she said, “I was looking at a new kid.”
Donaldson asked Bleggi to give Darryl a part in the Christmas play.
“It was a big deal for him,” Donaldson said. “Being in the play showed him and everybody that he wasn’t an outcast.”
It meant a lot more than positive reinforcement to Darryl.
“There were a lot of people, like a thousand,” he recounted. “I tried to act cool, but my heart was beating. When it was over, I felt happy. My family was proud of me.”
Darryl is happier, having more fun, getting in trouble less often and getting much better grades. Donaldson says his reading level is way up. He helps in the classroom, cleaning up and handing out folders and papers to his fellow students. He fits in at Glad Tidings in a way that he never had in school before.
“The whole school loves him,” Bleggi said. “We’re able to see his little personality now, instead of him being angry and disrespectful all the time.”
“I used to cringe every time I would hear his name, but now he comes up and gives me the biggest hugs. I can’t wait to see him in the morning. I can’t wait to hear what grade he got on his test, and he always comes up to show me now. It’s probably one of my favorite stories since working here. It’s been the most impressive turnaround I’ve seen any student make.”
About Glad Tidings Academy
Opened as a preschool in 2005, Glad Tidings expanded to kindergarten in 2014 and opened a second campus for K-8 in 2016. The school plans to have ninth grade next year and to add grades 10-12 each year thereafter. Glad Tidings is accredited and certified by Florida League of Christian Schools (FLOCS). There are 108 K-8 students, including 75 on Step Up For Students FTC scholarship. Glad Tidings emphasizes a child’s emotional, physical, relational, and cognitive development. The school uses Bob Jones University Press and Abeka curricula. The MAP Growth test is administered three times a year. Annual tuition is $5,940 for K-5 and $6,370 for 6-8.
Jeff Barlis can be reached at firstname.lastname@example.org.
By JEFF BARLIS
GROVELAND, Fla. – The sign at their church trumpeted the opening of a new private school:
For Adaijah Jackson and her mother, Sheila James, the word Hope was all they saw.
“It was an answer to prayer,” Sheila said, smiling and shaking her head at the memory. “The timing was just perfect.”
Adaijah (pronounced Ahd-asia) was desperate to leave the neighborhood school where she had nearly failed 10th grade.
Sheila was a single mom with two children and a job working the overnight shift at a convenience store. She never thought she could afford Hope. But the school told her about the Florida Tax Credit scholarship from Step Up For Students that covered tuition.
“It changed our lives,” she said. “I wish I would have known about the scholarship earlier.”
As a child, Adaijah was very bright and happy. You couldn’t miss her gleaming eyes and deep dimples, because she smiled all the time. She was a sensitive soul at 10, and her life was thrown into turmoil when her great grandmother died, and her parents split a few months later.
That’s when Sheila and her kids moved to Miami to live with her parents. Adaijah had been a strong student in a small PK-5 charter school in Orlando, but suddenly she was finishing fifth grade in a new neighborhood and a much larger school.
“It was the worst thing ever,” she said, recalling the confusion she felt walking into classrooms with two or three times the number of students she was accustomed to.
They lived in Miami for just eight months before moving back north to Minneola, about 30 miles west of Orlando. But the switch to large neighborhood schools had just begun, and Adaijah continued to feel like an outsider, even with a clean slate at the start of middle school.
“I didn’t know anyone,” she said. “It was hard to fit in with a large group of people.”
That’s when the bullying began.
“They used to call me bad names – fat, chubby, short,” she said. “They made fun of my natural hair. I have curly, kinky hair sitting up on my head, and it’s really poofy. I grew up loving my hair.”
She switched to extensions, wigs and weaves. Anything to try to fit in.
She found no friends among the girls, and the boys were merciless. They catcalled when she ate lunch and when she tried to exercise in PE class.
“It was torture,” she said. “They wrecked my self-esteem.”
Adaijah went from A’s and B’s in sixth grade to B’s and C’s in eighth. High school, with more than 2,000 students, was worse. She kept to herself for most of her freshman year, but her desire for acceptance took on more urgency, and she settled for any friends she could get.
They skipped class constantly and hardly studied. At home, Adaijah was angry all the time, talking back and getting in petty fights with younger brother Adrian.
She wasn’t herself. Her GPA bottomed out at 1.3. It was time for a change.
“I could not go back for my junior year,” she said. “I knew I was either going to be arrested or get pregnant. I was not going to make it to college.”
Then she found Hope.
Adaijah and her brother were among the first of 25 students to enroll. Everyone was smiling again.
Though she was quiet and guarded at first, Adaijah knew she belonged. She felt safe and comfortable. With only a handful of classmates, she got to know her teachers personally, just how it was at her charter elementary school.
She bought in to everything – even the dress code and no-cellphone policy. She recovered some lost credits, turned her grades completely around, and became a role model to the younger students.
Principal Eucretiae Waite and her staff had a hard time connecting this Adaijah to her past.
“We couldn’t believe that she was really struggling, but of course we saw the transcript,” Waite said. “She came here and was just phenomenal. We figured it was just because we’re a small school and she got more attention.”
“She was willing to help in the classroom and outside the classroom. She would stay after school. We would have to literally take her home sometimes. Like, ‘Adaijah are you going home today?’ ”
In two years at Hope Academy, Adaijah got all A’s and one B and graduated last spring with honors. Teachers and administrators had promised to get her ready for college, and together, that promise was fulfilled.
Adaijah was accepted to South Florida, Florida International, Florida Atlantic and Southeastern among others. But she decided to attend Tallahassee Community College. She started in August and is loving the confidence that has come with her newfound independence.
She plans to stay at TCC for two years before going to Florida State to study physical therapy.
Why not go straight to one of those universities?
“I wasn’t ready for a four-year school,” she said. “I like the smaller setting.”
Adaijah didn’t just survive her rocky roads, she learned from the bumps. She’s planning to build a business in Houston or Atlanta someday, and she knows just the steps to get there.
“I’ve always thrived in small situations,” she said. “So for me to even think about big cities … it’s like, ‘Whoa, you are really growing.’ ”
Thanks, in part, to finding Hope.
About Hope Preparatory Academy
Opened in 2016, the school is affiliated with non-denominational Hope International Church in Groveland. It has 76 students in grades 6-12, 63 of whom use Step Up For Students scholarships. The school uses the Edgenuity curriculum with an emphasis on college prep courses. The Terranova 3 test is administered annually, and high school students also take the SAT and ACT. Tuition is $6,300 for grades 6-8 and $6,700 for grades 9-12.
Jeff Barlis can be reached at email@example.com.
By JEFF BARLIS
Last fall, as she started her senior year in high school, IvonD’liz Chernoff was full of love and gratitude. She was excelling in school. She had overcome years of ridicule. She was headed for college.
Tracking a monster hurricane was the last thing on her mind.
But there it was. Maria. Tearing through her beloved Puerto Rico.
“I couldn’t look away,” IvonD’liz recounted. “Houses with roofs coming off, water coming in from the ocean. It was terrifying … heartbreaking. The worst part was the aftermath, seeing people suffering, kids crying because they don’t have a home or food or because their dolls are gone with the storm.”
I have to do something, she thought.
So she did. The girl who failed third grade was now student body president. The girl rescued by a Florida Tax Credit Scholarship through Step Up For Students now found the strength to rescue others.
I can move mountains, she thought.
IvonD’liz, also known as Ivon or Ivy, was born in Orlando. But in her heart, she’s Puerto Rican. She moved to the U.S. territory when she was three months old, and didn’t return to central Florida, to live with her grandparents, until she was 5. “I’m a pure Latina,” she said with an accent, a broad smile and a little shimmy that sent her tight, black curls into a dance. “My whole family shares that Puerto Rican spice.”
Florida turned out to be turbulent. When Ivon began attending her neighborhood kindergarten, she didn’t know English. She soon became comfortable speaking it. But reading?
“Reading was really difficult,” she said, “especially when you had to stand up. I would stutter. The kids who knew English would laugh.”
Ivon felt the sting of classmates calling her dumb. She cried a lot.
When her mom got married a few years later, she took Ivon and her two sisters from their grandparents’ home and moved south to Poinciana. In school, Ivon continued to struggle. She was bullied by a boy who picked on her incessantly. She got mostly F’s and D’s. She didn’t have many friends.
“I didn’t feel accepted,” she said.
After a falling out with her mother, Ivon and her two sisters moved back to Orlando to live with their grandparents. Despite financial hardships, it was peaceful and stable. Ivon’s grades rebounded.
As a freshman at her neighborhood high school, Ivon did well and was happy. But she told her grandmother, Luz Ruiz, she wanted to leave because the classes were so large.
“I didn’t like the fact that when I didn’t understand anything, they couldn’t slow it down for me,” she said. “I wanted to go somewhere where I could have a one-on-one conversation with a teacher.”
Enter Raising Knowledge Academy. Ivon and her grandmother toured the school and met the principal, a strong, warm-hearted woman named Ariam Cotto. It was too late to get a Step Up scholarship, Ms. Cotto explained. But when she saw Ivon’s enthusiasm for the school, she worked out an affordable payment plan with Ivon’s grandmother, who worked in housekeeping at Disney.
“She saw something in me,” Ivon said. “I was so happy I was crying when we left.”
It took time for Ivon to find her groove. But with a Step Up scholarship in place for her 11th grade year, the self-admitted goofy kid started taking school more seriously. In her senior year, she was elected student body president.
Then Maria happened.
The destruction devastated Ivon. But it also spurred her to action.
She immediately went to Cotto, and they came up with a plan.
It was simple at first. Ivon and some students stood at the busy intersection near the school with signs for hurricane relief, waving a Puerto Rican flag and selling water bottles. The early donations were encouraging. The first time someone handed Ivon $40 was stunning. But she was thinking bigger.
While Cotto called local officials, Ivon galvanized the entire school community – students, parents, their churches. It took weeks to plan and even longer to coordinate with a church in Puerto Rico, but the refocused efforts paid off.
Donations streamed in – food, supplies, aid kits and money ($1,000 in one day gave everyone shivers of empowered delight). Students filled bags and boxes with supplies for women, men, children and babies.
“She raised more than $7,000 and another $5,000 in food and clothing,” Mrs. Cotto said, crediting Ivon as the driving force. “She’s a wonderful leader.”
Ivon accumulated 120 volunteer hours in two months. At graduation, the school gave her its Citizenship Award.
She finished with a 3.5 GPA. She was also accepted to Adventist University of Health Sciences, where she plans to become a pediatric cancer nurse.
Ivon’s nursing aspirations began five years ago, when she learned from post-operation hospital nurses how to care for her grandparents at home. She cries happily at the thought of how much they’ve done for her.
Grandma couldn’t be prouder to see how Ivon has grown. She credits Raising Knowledge Academy. “There were moments when Ivon fell down,” she said, “and they helped her get back up.”
She’s well on her way to paying it forward.
About Raising Knowledge Academy
Opened in 2015, the non-denominational non-profit had 92 K-12 students last year, including 46 on Step Up scholarships. The school uses Alpha and Omega Publications’ Horizons and Ignitia curriculums, which allow students to customize elective learning in addition to five core subjects. It offers advanced classes and dual enrollment through Valencia College. Its teachers are state certified, class sizes are between 8-10 students, and the school administers NWEA’s Measures of Academic Performance (MAP) test. Tuition is $6,100.
Jeff Barlis can be reached at firstname.lastname@example.org.
By PAUL SOOST
Republic National Distributing Company (RNDC), the nation’s second largest wine and spirits wholesaler, announced on Feb. 6 a contribution of $65 million to the Step Up For Students Scholarship Program, which serves lower-income children in Florida.
The donation was announced during RNDC’s state sales meeting, held on a soundstage at Universal Studios Orlando.
RNDC’s donation will allow more than 9,940 K-12 students to attend the school of their choice through Florida Tax Credit scholarships for the 2017-18 school year.
“Making a difference in the life of a student, their family and our community makes us very proud. For many students, having the opportunity to choose a school that best meets their learning needs can propel them on a path toward a better future,” said RNDC Executive Vice President Ron Barcena. “We’re proud to support Florida schoolchildren through the Step Up For Students Scholarship Program.”
This is the sixth consecutive year RNDC has contributed to the nonprofit organization that administers the Florida Tax Credit Scholarship Program for financially disadvantaged schoolchildren. The program is funded with tax-credited donations and allows parents and schoolchildren to choose between a K-12 scholarship that helps with private school tuition and fees, or one that assists with transportation costs to out-of-county public schools.
“Step Up For Students allows lower-income families the opportunity to attend schools they might not otherwise be able to afford. But we couldn’t do this without the support and generosity of our donors,” said Step Up For Students President Doug Tuthill. “Since 2012, RNDC has contributed $180 million, providing more than 30,665 scholarships. On behalf of Step Up and the families we serve, we thank you for your continued commitment and generosity.”
Step Up scholarship graduate Orlando Rivera and his mother Deborah DeJesus attended the event to share their story with the RNDC associates. During his junior year of high school, Orlando’s grades had dropped to nearly failing. With help from a Florida Tax Credit Scholarship, Orlando was able to change schools and attend Heritage Christian School in Kissimmee.
“Going to Heritage turned my life around,” said Orlando. “Today, I’m a freshman at Embry-Riddle, studying aeronautical science on the airline pilot specialty track. I’d like to thank Step Up For Students and donors like RNDC for making this possible.”
For the 2017-18 school year, Step Up For Students is serving more than 100,000 students throughout Florida with tuition scholarships valued at up to $6,343 per student for kindergarten through fifth grade, $6,631 for sixth through eighth grade, and $6,920 for ninth through 12th grade. More than 1,700 private schools participate in the scholarship program statewide.
Paul Soost can be reached at email@example.com.
By JEFF BARLIS
Every week, students and parents at Calvary City Christian Academy, a K-12 school in one of Orlando’s most hardscrabble communities, convert groceries into care packages for scores of their neighbors. That those neighbors happen to be homeless students at Sadler Elementary, another school three blocks away, is only the first clue that the relationship between these high-poverty schools – one public, one private – is special.
For four years, the schools have worked hand-in-hand to serve their students, parents and neighborhoods, regardless of which school the students attend.
The result: Both schools and their heavily Hispanic populations now benefit from a wide array of social services – everything from English-language classes to housing assistance – provided by the church affiliated with Calvary. Both see each other as assets that can best uplift a community by cooperating. And both are quietly offering a glimpse of what’s possible if artificial walls between public and private schools can be knocked down.
“We’re modeling what is right by working together,” said Calvary principal Denise Vega. “That sends a message to our parents. We’re not divided. We’re not two. We’re one. One with one purpose – to work together to make sure our children in our lower-income communities are getting everything possible. That only happens when you unite.”
“You think of it as an octopus with eight legs,” said Sadler principal Kahlil Ortiz. “There are certain things that these legs can do, and certain things that those legs can do. So that’s kind of how we work. What can I help you with? What can you help me with?”
The partnership started with a phone call.
Four years ago, officials at Sadler asked Calvario City Church if they could use the church as a shelter in case of emergency. Of course, the pastors said. Is there anything else we can do?
That’s when they heard about Sadler’s homeless children. There were 30 to 40 back then. Now there are 85 to 90. (Sadler’s enrollment ballooned from 400 to 800 over that span.)
Vega, who is also a children’s pastor at the church, said she was in shock. “I felt a burden,” said Vega, a whirlwind of motion with a perpetually hoarse voice. “How can you learn on an empty stomach?”
One hundred percent of students at Sadler are eligible for free- or reduced-price lunch. About 60 percent are English language learners. The demographics at Calvary City Christian Academy are challenging, too, with about 90 percent of students using the Florida Tax Credit Scholarship for lower-income students. The scholarship is administered by Step Up For Students.
But that didn’t deter anyone at either school from joining hands. In fact, the profound need compelled it.
The schools and the church hatched a plan to provide food to the homeless families on weekends, when the public school could not provide for the students. The groceries are purchased on Wednesdays, bagged on Thursdays and handed out from a pantry at Sadler on Fridays.
In addition, large companies like Publix, Goya, Nabisco and Merita have donated food unsolicited. It all ends up with the lowest-income families at Sadler.
Valeria Angeles, a sixth-grader who attended Sadler from K-5, was one of the students who received them. She brought them to her grandmother, Enitt Manzano, at the hotel she paid for weekly.
“I was so surprised and amazed,” said Manzano. “I didn’t have words to describe the happiness. It’s only the two of us, and all of a sudden we were overwhelmed with so many groceries.”
Valeria now attends Calvary City Christian Academy. She did well at Sadler, but her grandmother wanted to put her in a private school and she qualified for a Step Up scholarship.
Vega said there have been occasions in which each school has recommended to parents that the other might be a better fit for their child. The bottom line, she said, is helping the community, not staking out territory.
“Are they my competition? No!” Vega said. “These are children and they need support from people who are willing to extend a helping hand. That’s all we want to be.”
Food wasn’t the only thing missing at Sadler.
As the schools grew closer, other needs were identified and other services offered.
To start the school year, Calvary families round up backpacks full of school supplies to give to their counterparts at Sadler. At Thanksgiving, they give additional baskets full of food. At Christmas, they deliver presents in an Angel Tree event in response to student wish lists.
Calvary students, families and church members have painted buildings at Sadler and gardened in the courtyard. Vega taps into the church’s ministries for more resources.
The result is a suite of wraparound services for Sadler’s most disadvantaged families: English-language classes for parents. Assistance in getting food stamps, affordable housing, health care and jobs. There are even referrals for drug rehabilitation and a shelter for abused women.
“Everything that is available to us, we make available to the community,” Vega said.
Vega and Ortiz have forged a tight bond that reflects the closeness of their schools. They laugh together, plan social events together, and finish each other’s sentences.
A 15-year educator, Ortiz said the support his school receives from Calvary is unlike anything he’s ever experienced. It’s given him a vision of the future where institutions, including schools, can form even stronger ties to maximize their strengths.
“There should be no hurdles to providing for the community. That’s it. That’s basically what this is all about,” he said. “It’s just saying there are no lines here. Let’s make sure we can help our neighbor out, just as they would help us.”
About Calvary City Christian Academy
Located in Orlando’s Oak Ridge community, the school is a ministry of Calvario City Church and was formerly known as Iglesia El Calvario. There are 256 K-12 students, including 226 on the Step Up scholarship. Affiliated with the Florida League of Christian Schools (FLOCS), the school is accredited by the Association of Christian Teachers and Schools (ACTS) as well as Green Apple. It uses a mix of A Beka, Bob Jones and Saxon Math curriculums. The Terranova test is administered three times a year to measure growth. Tuition is $6,000 annually for K-8 and $6,300 for high school.
Reach Jeff Barlis at firstname.lastname@example.org.
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.
BY GEOFF FOX
Nine years ago, Kamelia Martin was born perfectly healthy in Bulgaria. Yet, her adoptive mother, Christen Martin, said for years she was given a regimen of anti-seizure medication, tranquilizers and sedatives.
The circumstances made for a tough, turbulent adjustment after Martin and her husband, Mason Martin, adopted Kamelia two years ago.
“When an infant comes into the orphanage, they’re put in an isolation room where they learn their cries won’t get any attention,” Christen Martin said. “After they don’t cry, they get to come in the room with other children.
“They are treated like animals. They never experience the love of a father or mother. They’re put into a (drug-induced) stupor so they’ll be quiet and compliant.”
For Kamelia, the results were horrific.
By the time Martin and her husband, Mason Martin, adopted her from the orphange, she was diagnosed with institutional autism and her IQ was measured at 35, the low threshold for moderate intellectual disability.
Because she had been malnourished for so long, Kamelia’s head was too small for her body and her ankles were weak and misshapen; she could not walk until she was 3. When the Martins brought her home to Louisiana, where Mason Martin was stationed with the U.S. Air Force, she could hardly communicate or speak, even in Bulgarian.
None of that deterred the Martins, who had three young children of their own when they decided to adopt Kamelia, who they often call “Kami.” Christen Martin said the couple knew since they got married that “God was calling us to adopt.”
“It was a divine sequence of events,” Christen Martin said. “The Lord just weighed Bulgaria on my heart.”
When the Martins first saw a photo of Kamelia, they saw a small, scared, lonely-looking girl. The photo weighed on them. They knew they wanted to help.
“When we pulled her file to find out more about her, we discovered she was born on Mason’s birthday the year of our marriage,” Christen Martin said. “Many little details like this worked together to encourage us each step of the way that our family was right for Kami.”
After an adoption process that took the Martins several months and a couple of trips to Bulgaria, Kami came to live with them in 2014. The transition from living in a cold, unloving Bulgarian orphanage to life in an American home with parents and siblings was turbulent for both Kami and her new family, including brothers Ezekiel, 7, and Isaiah, 3, and sister Eden, 5.
At the time, Kami was 7. She didn’t know how to play and could barely communicate. And, after years of being administered unneeded medication, she endured withdrawal from the drugs when she came to live with the Martins.
“The Bulgarian orphanage staff gave us prescriptions for medications they truly believed she needed,” Christen Martin said. “We consulted with a Bulgarian psychiatrist and she encouraged us to get her off them gradually. The withdrawal was definitely intense. There was so much outrageous behavior already that we didn’t know what were withdrawal symptoms.
“There was a lot of screaming, thrashing, rolling, clawing and biting. She wasn’t given any tools for healthy or normal communication. If she was disappointed, she’d drop to the ground and roll, scream and writhe. She was definitely just driven by instincts every moment and ruled by them without self-control. What happens to a person when they’re never given any love is tragic.”
The Martins tried to brace their biological children for the ordeal.
“They responded amazingly. We prayed for her together,” Christen Martin said. “When the other kids witnessed the screaming and scary behavior, they were nervous and afraid and it was hard, but the other children learned from an early age about loving others and how truly ugly child abandonment is; it’s one of the worst things in the world. They realize this is why you have a family. We all need it. I think they’ve taught Kami more than Mason and I could. They taught her how to play and be a child.”
In 2015, the Martins moved to Orlando. By then, Mason Martin was out of the Air Force and working for Wycliffe Bible Translators, which focuses on translating the Bible into hundreds of languages.
Christen Martin homeschools her children, but she needed help with Kami. In Orlando, the family learned about the Gardiner Scholarship managed by Step Up For Students.
The Martins applied for the scholarship and Kami was accepted, due to her intellectual disability. They used the scholarship to hire Kathy Wood, an occupational therapist who has worked with Kami twice a week for about a year.
It was slow going, at first.
“I do in-home therapy and I met her with her family around her,” Wood said. “It’s nice to have that advantage because sometimes a clinic can add a whole level of distance. That said, Kami was very difficult to engage. I hate to say she was a feral child, but that’s a clear view of what it felt like. She had not had a lot of human contact.
“When she first arrived, there was still a lot of no eye contact and she would not tolerate being touched at all. She would not engage me in any way. She would turn her back on me and would not include me in her space – like an animal might do to protect itself or home.”
But Wood showed up consistently and slowly earned Kami’s trust. After a few weeks, Kami allowed Wood to perform reflex techniques that help train her body to adjust to life outside of a crib.
“We do basic exercises,” Wood said. “On her feet, I stimulate the tendons to increase walking ability, coordination and balance, even her emotions. I do cross-body reflexes, where you stimulate the bottom left foot and raise the right leg, cross it over the body and back down. Then, we do the other leg. You work both halves of the brain that way. It increases coordination and motor control.”
Kami has been speaking more lately, but there is much progress yet to be made. The family uses most of the scholarship money for occupational therapy, but it has also covered a trip to a pediatric eye doctor.
“She’s probably not very clear if you don’t know what she’s trying to say. Her thoughts are jumbled and she’s trying to figure out how to say things,” Wood said. “I’ve learned her language a little bit. The other day, she was telling me about a trip to the playground. She said, ‘Miss Kathy, swing at the playground, tic-tack, tic-tack, tic-tack.’ She was telling me about the trip to the playground and how she heard the swing going up and down.
“She’s wired differently than you and I; she is very in tune to sounds. She learned in that crib what was safe and not safe by sound. Her senses of sound, hearing and touch are all heightened because she didn’t get proper development.”
Simply being around the Martins has been crucial to Kami’s development, Wood said.
“Four or five months ago, I saw her imitating and playing pretend for the first time. She put a baby doll to bed with a blanket – it was appropriate play,” Wood said. “She had been playing with her sister and her sister taught her that. She wasn’t hitting the baby against the wall, it was very appropriate. She could mimic a loving gesture. She has the ability to understand sequence. That shows me she has tremendous ability to grow and thrive in many ways.
“I’m really excited for her potential. Last week, she looked at me, smiled warmly and said ‘Miss Kathy.’ We were playing a silly little game, but she connected with me in a genuine way.”
Mason Martin said he is encouraged by the progress Kami has made since she joined the family two years ago, but he understands there is still a lot of work to do. Like most parents, he wants his children to become happy, productive, self-sufficient adults.
“It’s been a lot of work for her and she’s never really been made to do that work before,” he said. “She needs somebody to spend time with her. It’s been exciting and a lot of difficult challenges on the way – some days more than others. The best way to describe it is she’s very resilient. As long as we don’t give up on her, she won’t give up. … She really needed somebody who wouldn’t give up on her. It’s been amazing to see.”
Christen Martin said Kami is on about the same social level as a preschooler, but is learning how to act appropriately around people. Academically, she has progressed a bit further.
“She longs for connection, but it takes time to understand how to relate to others in proper ways,” Christen Martin said. “She is in the pre-writing stage; she knows her colors, shapes, some animals and everyday objects. She’s working on forming letters and learning their sounds, and we do believe she will learn to read and write. We just don’t know what the timetable will look like.”
By GEOFF FOX
Darius Cook wants to someday become an entrepreneur.
He isn’t sure yet what type of business he wants to run, but the outgoing recent graduate of Dr. Phillips High School in Orlando said he feels confident that his communications skills will be used.
Cook, 18, is working as a cashier at Publix, while he waits to start classes at Valencia College in August. After completing two years at Valencia, he plans to transfer to the University of Central Florida in Orlando. The costs will be covered, in part, by a tuition-reimbursement program at Publix.
His mother, Amy Cook, takes pride in her oldest son’s bright prospects. In 2008, as Darius prepared to enter fifth grade, the single mother of four worried he wasn’t getting a quality education at their neighborhood school.
“It was the worst of the worst,” she said. “My daughter went there, so I was kind of involved, but the environment and the other kids there were not nice kids. And there was no personalized attention. There was no art and music, just math and reading, and tutoring to pass the FCAT.”
At the day care center where her youngest children stayed, administrators told Cook about Step Up For Students, the nonprofit that helps manage the Florida Tax Credit Scholarship. The program helps expand educational opportunities for lower-income children.
Cook was skeptical. She said she applied for the scholarship in 2008, mostly so the day care workers would stop “pushing me to sign up for it.”
She is now thankful for their perseverance.
“It wasn’t difficult; it was too good to be true,” said Cook, who works as a server at a local deli. “I didn’t think it was going to happen.”
Thanks to the scholarship, Darius was enrolled at Saint Andrew Catholic School, a kindergarten through eighth grade school in south Orlando.
“It’s literally in my backyard. I mean, we can literally jump the fence to get there,” Cook said. “And it is a (National) Blue Ribbon school. When Darius started going to Saint Andrew, I noticed how much of a better education he got than my (older) daughter. It’s a huge difference, especially among their peers. There’s no bullying. It’s friendly and a nice environment.”
Darius said the differences between Saint Andrew and the public school were obvious from Day One.
“It’s a more controlled learning environment,” he said. “The classes are smaller and the teachers are a lot more available to help you. Multiple times, I went in earlier in the morning and my math teacher came in early to tutor me, just because I asked her to.
“To this day, I feel close enough to go in and talk with them.”
Besides excelling in the classroom at Saint Andrew, Darius participated in soccer, volleyball, basketball and track.
“Darius was always a gifted communicator and leader in his class,” said Andy Sojourner, assistant principal at Saint Andrew. “I’ve seen him a few times since he graduated and gone onto the public high school. He talks about how much he valued his time here and wants to be involved in alumni (groups) in a leadership capacity.”
While Dr. Phillips High is a public school, Cook said that Saint Andrew helped Darius make a smooth transition.
“They really work on your individual needs,” she said. “The school’s eighth-grade class was small – 30 kids. Some of them went to another private high school. Darius and four other kids went to Dr. Phillips, and (Saint Andrew) did a very good job of preparing them.”
Cook’s youngest sons, A.J., 13, and Nicolas, 8, now attend Saint Andrew, thanks again to Step Up and the scholarship program.
According to Sojourner, A.J. is also a gifted student-athlete.
“He balances (sports and academics) really well,” Sojourner said. “Nicolas is a great young man. Their family is just very involved in the community. They’re always at our fundraisers and volunteering for activities at the school.”
Nowadays, when he isn’t working or studying, Darius said he most enjoys attending a local ping-pong club, where he takes lessons and competes against high-level players.
While his future aspirations are formulating, he has a general idea that his communications talents will come into play.
“At a young age it was cultivated that I had good skills in talking to people and handling situations,” he said. “I’ll find what’s best for me, based on my skill set.”
Geoff Fox is always looking to tell a great story about our scholarship programs. Have Step Up students, partner school, therapist, teacher or other related news you to see a story about? Please reach him at email@example.com.