By ROGER MOONEY
At three months old, Joshua Sandoval was diagnosed with tuberous sclerosis complex, a genetic disorder where the body produces benign tumors.
The tumors are in his brain, and the medication needed to prevent daily seizures makes him fidgety. Staying focused during class can be a chore.
Teachers at prior schools told Joshua’s mother, Nilsa, that her son had behavioral issues and struggled to finish assignments. In the words of one, Joshua was “unteachable.”
Nonsense, Nilsa said. Her son can speak two languages (English and Spanish), is an avid reader and has an extensive vocabulary for a child his age. Joshua, now 13, just needed the right academic setting.
Like many parents of children with special needs and learning disabilities, Nilsa searched for a school that could meet Joshua’s needs. She found one at LIFT Educational Academy, a private one-through-12 school in Miami Lakes, Florida, not far from their home.
LIFT is a psychology, tutoring and brain fitness center that helps children develop the brain skills essential for learning.
After bouncing through six neighborhood schools since Joshua began first grade, Nilsa had finally found the right fit for her son.
There are a number of schools across Florida equipped to serve students with special needs. Many accept the Gardiner Scholarship, which allows parents to personalize the education of their children with certain unique abilities by directing money toward a participating school, a combination of approved programs and services, as well as other approved providers and resources. These include schools, therapists, specialists, curriculum, technology – even a college savings account.
This scholarship is for Florida students 3 years old through 12th grade or age 22, whichever comes first, with one of the following disabilities: Autism spectrum disorder, Muscular dystrophy, Cerebral palsy, Down syndrome, Phelan McDermid syndrome, Prader-Willi syndrome, Spina bifida, Williams syndrome, Intellectual disability (severe cognitive impairment), rare diseases as defined by the National Organization for Rare Disorders, anaphylaxis, deaf, visually impaired, dual sensory impaired, traumatic brain injured, hospital or homebound as defined by the rules of the State Board of Education and evidenced by reports from local school districts, or three, four or five year-olds who are deemed high-risk due to developmental delays.
The Gardiner Scholarship is a boon to children with certain special needs and their families. You can read here about Julian, who has cerebral palsy, hydrocephalus and a severe hearing loss that has impeded his speech, and here about Ryan, who is on the autism spectrum, and here about Valentina, who has Down syndrome.
You can read Joshua’s story here, though there is a postscript. LIFT Educational Academy went virtual during the COVID-19 pandemic. Nilsa said Joshua did not respond well to that type of learning. So, she searched for another school that would fit his needs. In short time, she found one – Aktiv Learning Academy in Miami, which is also close to their Miami Lakes home and accepts the Gardiner Scholarship.
Nilsa said the transition was smooth.
“Joshua is going to an in-person school that is simply fabulous,” Nilsa said. “He is super happy and back to learning.”
Roger Mooney can be reached at rmooney@StepUpForStudents.org.
By ROGER MOONEY
TALLAHASSEE, Fla. – There were more children like Karwen back in her native China, born with clubfoot and unable to walk. Some who would never take a first step.
At the orphanage where she had lived from an infant on, Karwen was surrounded by other children with special needs, covering the spectrum from mild to severe. Most of them did not get the attention they needed and deserved. But Karwen was one of the lucky ones.
In 2012 when she was 8, Karwen was adopted by an American couple, Keely and Nick Cogan. Her new life was transformative. In addition to having loving parents, she now had two sisters and a brother. With their help, she quickly learned to speak English. Her medical needs were promptly addressed. Eventually, she learned to walk.
The transition, said her father, Nick, “was atypically easy for her.”
But, as Karwen blended into her new family, she couldn’t shake memories of the children left behind, those who were headed for lives as outcasts. In her homeland, those with special needs are alienated.
Orphans may never know the love of a mother’s hug. May never roll their eyes at a dad’s joke. May never share a secret with a sister.
“After I came home it was nice, and I wanted to go and help bring somebody else home,” said Karwen, now 15.
So, while helping with the dishes one night, six months after her adoption, Karwen asked her parents if they could adopt again.
“I think we can be a family for at least one more,” she told her parents.
One more? Keely and Nick knew before they came home with Karwen they would return to China to adopt another child with special needs. But “one more” child became two when the Cogans adopted sons Kai and Kade. Three years later, daughter Kassi joined the family. They also have special needs and all four children use the Gardiner Scholarship, managed by Step Up For Students.
Today, the Cogans are a family of nine that’s soon to be a family of 11 when the adoptions of two children from the Ukraine are completed this spring.
“It’s easier than you would imagine,” Nick said of his growing family.
The daily workings of the Cogan family can be a grind at times, he said, just as they are for any large family. But the emotional part?
“Connecting to them as a family and trying to understand the struggles they have, I found that the easiest part,” Nick said.
Added Keely, “People say, ‘Oh you guys are so great,’ or, ‘What an amazing thing to do.’ The downright truth of it is we probably get the better end of the bargain because we look at the world so much different.
“My kids learned that it doesn’t matter where your brothers and sister come from. Someone can just come into your family and be a brother and sister and the world just got so much smaller.”
How one became four
Keely and Nick had three biological children– daughters Kenley and Kolya and son Kellin – when they decided to adopt. They learned of children in China who were left at orphanages because they were born with a special need.
Love Without Boundaries, an international charity that aids in the adoption of orphans, estimates that 750,000 Chinese children live in orphanages, with 98% of them having a special need.
“In China, physical differences are a major barrier, especially (for) children in orphanages,” Nick said.
“(Special needs are) considered unlucky,” Keely said. “Unlucky to the point of being contagious.”
Keely, a pediatric nurse, said she was not intimidated by the thought of adopting a child with special needs.
“It didn’t worry me,” she said.
Nick, a math professor at Florida State University, and Keely knew their biological children would be accepting and patient with their new siblings.
Karwen was first. She has arthrogryposis, the condition that results in a congenital joint contracture of two joints. She did have surgery in China but used a wheelchair. She had more surgeries after her adoption and can now walk on her own.
“I can do a lot more things now than I would have been able to do (in China),” Karwen said.
And about that request made shortly after joining the family? Keely and Nick already knew about Kai, who has cerebral palsy, and began the adoption process in 2013. That’s when they learned about Kade, who also has arthrogryposis. His condition is limb immobilization. He cannot bend his knees.
So, Keely thought, what’s one more child?
The transition for the boys was not as smooth as it was for their sister.
Kade didn’t know how to be held, because contact with adults in Chinese orphanages is limited to prevent the formation of a bond that might someday be broken if the child is adopted.
Kade would stiffen when Keely tried to hold him. He also cried himself to sleep each night, sometimes for as long as five hours. Keely said it took nearly six months for Kade to accept being in his mother’s arms.
It wasn’t long after adopting the first three when Keely and Nick found themselves working as advocates for orphans in China. That’s how they met Kassi in 2016.
Kassi, who has cerebral palsy, was nearing her 14th birthday, the deadline for a child in China to be adopted. Once they turn 14, those who are employable are given jobs. Those who are not, continue to live in institutions, Nick said.
“We felt like we were set up for this need,” Keely said. “It wouldn’t be a hardship for us, so we stepped forward and home she came three days before she aged out. If we got there three days later there would be nothing we could do.”
Kassi, now 17, was also born with clubfoot, which is a complication associated with CP. She actually learned to walk on her ankle bones, though mostly moved around on her knees. After her adoption, she underwent a series of castings that stretched the muscles in her feet and ankles. She walks today with the aid of her forearm crutches. Though she has a walker, she rarely uses it.
The Gardiner Scholarship at work
All the children are currently homeschooled, but over the years some have received physical, occupational and speech therapy, and some have used tuition assistance. Each child had unique needs.
For instance, Karwen, her hands are locked in a downward position because of her arthrogryposis, has a custom keyboard for her computer and special grips to hold pencils and pens.
Kade, 8, attended a small private school for two years. He stopped this year because construction at the school made it tough for him to walk around the campus. He plans on returning next year.
The children came to America with not much of a formal education.
That posed a problem. The district schools didn’t know where to place them.
Keely said the district wanted to put Kai in middle school. That would not be fair to a student without the foundation of an elementary school educational who is also trying to learn English.
The answer was homeschooling. This way Keely and Nick could place their children in education-appropriate settings.
An adoption advocate
Kenley, the Cogan’s eldest biological child and a student at Tallahassee Community College who is pursuing a career in art therapy, works for two nonprofits that advocate for international adoption. She has traveled to China and Ukraine to assist families during the adoption process. She is conversational in Mandarin and is learning to speak Russian.
Kenley said it is “agonizing” to visit a Chinese orphanage and see rooms filled with children lying in rows of cribs, devoid of human contact and staring aimlessly.
“It just kills you to look at them and wonder what their potential could be if they had a family,” she said. “You want to hug them and take them home.”
Kenley said she knew when Karwen came home that adoption would be a major part of her life. She expects someday to adopt a child with special needs from China or Ukraine.
“That’s where my heart is,” she said.
Big and getting bigger
They refer to themselves as the Cogan Krewe.
They drive around in a 15-passenger Ford Transit Van, which they have nicknamed “Moby” because it is large and white.
It is a sight to see the family file out of the van.
“Like an airport shuttle bus,” Nick said.
“It’s a spectacle,” Kenley said.
Even when loaded with the full Krewe, there is room for a few more passengers. That’s good, because they expect to soon finalize the adoption of Sasha, 16, and Vova, 14, a brother and sister from Ukraine, who do not have special needs.
What? No ‘K’ names?
They will have that option, Keely said.
What began with the biological children has continued to those who were adopted.
When Karwen joined the family, she was given the choice of keeping her Chinese name or choosing and American name. She picked American.
“And she wanted it to begin with K to be inclusive,” Keely said.
The next three were given the same option. Obviously, they opted for a name beginning with the letter K.
The kids joke that Nick should spell his name “Knick.” He even signs Knick on the family Christmas cards.
“Wouldn’t want to leave anyone out,” Keely said.
Roger Mooney, marketing communications manager, can be reached at email@example.com.
By JEFF BARLIS
Fighting, skipping, smoking pot – Jake Clayton’s freshman year in a public high school was a disaster, with explosive anger issues leading to a school record 44 disciplinary actions. Most days, the skinny kid with the mischievous smile would walk off campus and hang at a friend’s house. He failed nearly every class.
After his expulsion, his older sister discovered an off-beat private school called Gator Wilderness Camp School, where troubled boys live on 250 acres with cows and bee hives and learn to find paths to success. Could this work for Jake?
Jake’s adoptive mom, Virginia Clayton, was desperate enough to give it a shot. And thanks to a McKay Scholarship, a type of school choice scholarship for Florida students with disabilities, she could afford it.
Today, Jake is 17, months from graduating from his virtual high school, and planning to go to college. “The anger never comes out any more,” he said. “I’d be in a pretty bad spot if I hadn’t gone to camp.”
Since its founding in 2009, Gator Wilderness Camp School has served 139 students – nearly all of them on school choice scholarships – and become another distinctive piece in Florida’s increasingly diverse mosaic of educational options. Most of the roughly 2,000 private schools that participate in the state’s scholarship programs could be described as “mainstream,” but there are plenty of niche schools like Gator Camp. State-supported choice programs allow them to cater to the more specific needs of individual students and parents, and the more specific visions of individual educators.
Greg Kanagy, director of Gator Camp, is one of them. The mild-mannered 50-year-old grew up loving the outdoors in Pennsylvania, and earned degrees in physical education and special ed. He liked the idea of combining the two. “But I didn’t relish the thought of spending 25-30 years inside of four walls,” he said.
In South Carolina, he worked for a similar school and found a passion for helping at-risk boys. The concept was inspired by a Texan named Campbell Loughmiller, who developed the first camp near Dallas in the 1940s and helped spread the idea around the country. After Kanagy got his master’s in education, the opportunity arose to move his family to the semi-tropical wilds of southwest Florida and start Gator Camp.
There is no sign on State Road 131 in Charlotte County when it’s time to turn off the paved road. That’s intentional. Isolation is key. A couple of miles down a dusty, white-sand road, the “school” sits, surrounded by vast tracts of farm land. The nearest visible neighbor is a sand and shell mine.
“I was a bit afraid of getting my hands dirty,” Jake said, “but I was up for giving it a try.”
The environment helped. It was hot and buggy, but also incredibly peaceful to hear nothing but animals and breezes making their way through the oaks, pines and cypresses.
The camp serves boys in three separate age groups between 10 and 15, with no more than eight campers in each. Most have special needs or disabilities. Many are deeply wounded.
“The families are pretty hopeless when they call us,” said Jackie Brucker, one of the camp’s two full-time family social workers.
A camper’s session lasts 15-18 months. Tuition is $1,000 a month, which sounds prohibitive, but the camp works with families to pay what they can. “We started in September 2009. We had one boy and two counselors,” said Kanagy. “His family said they could pay $200 a month, which (I knew) they couldn’t do. So, it’s got to come from somewhere.”
Gator Camp uses two types of choice scholarships to bridge tuition gaps: McKay Scholarships for students with disabilities, and the Florida Tax Credit Scholarship for lower-income students, which Step Up For Students helps manage.. The rest comes from grants and donations from organizations, businesses, and individuals.
Chief Greg – as he and the counselors are called – lists the tenants of how the camp works:
The camp has horses, cows, bees (a dozen kid-sized suits were donated so the boys can help the beekeeper when he visits) and an area known as “Fruit Alley” with rows and rows of fruit trees.
There are no cellphones or video games.
“Come to camp,” Kanagy said, “and you’ll never hear them talk about missing those things.”
The boys are free to focus on themselves and their group, which is always planning something – budgets, meals, upgrading the facilities by hand, and trips to hike, swim and canoe. Every structure at the group’s campsite – including complex tiki huts – is either built or rebuilt by the boys.
“These represent some of the biggest accomplishments of their lives,” Kanagy said.
Jake’s anger issues came up frequently in his early days at camp, but the group and the chiefs talked it out meticulously. There was a lot of arguing, he said, but it was handled pretty quickly.
Jake got into a routine of doing the right things, and after several months began to realize how self-centered he had been. That’s when he started to truly embrace the group and help drive its progress along with his own.
“You had to want to be there and make a difference in your life,” he said. “I try to carry a lot of stuff over from camp. Structure is a big one. I felt lucky to go to a camp like that.”
The camp says 80 percent of its students graduate; 85 percent of its graduates stay out of legal trouble; and 80 percent stay in school or work. That is “considered very high for the population we’re working with,” Kanagy said.
“What this camp does is give the boys purpose,” he continued. “This is about a culture, and we work really hard to develop it and keep it in place. It’s incredible to see our students’ accomplishments.”
Jeff Barlis can be reached at firstname.lastname@example.org.