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Education savings account allows Dylan to gain independence one step at a time

BY ROGER MOONEY

SEMINOLE, Florida – Dylan Quessenberry was 15 when he walked up a flight of stairs for the first time.

It was 20 steps, linking two floors at his school. But for Dylan, who has cerebral palsy, that staircase was more than just a route to the cafeteria at Learning Independence For Tomorrow (LiFT) Academy, a private K-12 school that serves neurodiverse students.

Those 20 steps were part of his journey to what he called “independence,” something he sought when he joined the school in the fifth grade on a Family Empowerment Scholarship for Students with Unique Abilities (formerly the Gardiner Scholarship).

“It was a defining moment in his life,” LiFT Principal Holly Andrade said. “A massive milestone.”

Dylan has “gained a lot of independence” during his seven years at LiFT Academy.

Dylan, now 18 and a senior at LiFT, recently recalled that day as if he were still standing at the summit, sweaty and spent and filled with a sense of accomplishment that few can understand.

Like a marathoner on race day, Dylan woke that morning knowing the years of work he put in with his physical therapist, Valerie, were about to pay off.

“Those stairs,” he thought, “are mine!”

And they were, one arduous step at a time.

Leaving his walker at the bottom and cheered on by students who were involved in afterschool programs, the school staff still on campus and Valerie, Dylan made the ascent. He pumped his fists in the air when he finished.

It took nearly half an hour.

“It was amazing,” he said. “I was like, glorified.”

Andrade arrived on the scene in time to see Dylan reach the second-floor landing.

“I cried like a baby,” she said. “Oh my gosh! I’ll never forget his face.”

It’s hard to imagine a bigger smile.


LiFT is not far from Dylan’s home in Seminole, where he lives with his mother, Marlena, and his twin brother, Ryan. The school includes LiFT University Transition Program, a four-year, post-high school program that Dylan will attend after he graduates this spring.

The program is for neurodiverse young adults who won’t follow the typical path for secondary education. It teaches employability skills, independent living skills and social skills. Community partners offer internships, which often lead to fulltime jobs.

Dylan said his mom’s blunt honestly about his physical limitations has allowed him to overcome a number of obstacles.

“This school has been amazing for him,” Marlena said. “I don’t know where we would be if we didn’t have LiFT Academy.

“He’s so fortunate to have this school. I’m so fortunate to have this school, because I can send him here and not have to worry about a thing.”

The Family Empowerment Scholarship for Students with Unique Abilities, managed by Step Up For Students, is an education savings account (ESA). ESAs allow parents to spend their children’s education dollars on a variety of educational purposes. Marlena uses it to cover Dylan’s tuition.

“If he didn’t have Step Up, he wouldn’t have accomplished what he has today,” Marlena said.

When Dylan arrived in the fifth grade, he couldn’t button his shirt or zip his jacket. He couldn’t open a bag of snacks or put a straw in his drink. He couldn’t open a door. Or walk up a flight of stairs.

In seven years, he changed those can’ts into cans.

“I gained a lot of independence,” Dylan said.

A lot of those gains were accomplished because of hours spent in physical and occupational therapy. Some were the product of surgeries.

“We’ve been through some surgeries,” Marlena said.

How many? Dylan and his mom both answer the question with a groan.

“About seven,” he said.

Dylan was born with scoliosis, reactive airway disease, a Grade IV brain bleed, Hydrocephalus and a congenital heart defect. He’s had surgeries to lengthen his hamstrings, heel cords and hip adductors.

On three occasions, Dylan spent six weeks in a cast that began at his chest and ran to the bottom of both feet.

What is remarkable about Dylan, Andrade said, is that in the seven years she has known him, she has never heard him complain about his surgeries or the obstacles placed in his life.

“Not once,” she said. “It’s that kind of positive attitude that has gotten him to where he is.”

Could you blame Dylan if he did? Especially when his twin brother does not have cerebral palsy.

“It was hard, at first,” Dylan admitted, “but I overcame the hardships of life and moved on. It’s still in the back of my mind.”

Dylan’s legs are not strong enough to support him on their own, so he uses a walker. He is working toward walking with canes.

The walker doesn’t slow him down. With it, Dylan is one of the fastest students in LiFT’s running club. Assistant Principal Darrin Karuzas never fails to offer this warning when he sees Dylan zip down a hallway:

“Slow down or you’ll get a ticket!”


Marlena has taught Dylan to embrace being neurodiverse. She was adopted by her parents and vividly recalled the day in the first grade when she mentioned that in class. Her teacher scolded her for talking about it.

“I was proud of being adopted,” Marlena said. “My parents taught me to be proud of it, and that’s what I tell Dylan, ‘Be proud of who you are.’ We don’t refer to it as a disability.”

Marlena has always been up front with her son about his physical limitations. There are some things Dylan can do and some he can’t, and Marlena has helped him deal with both sides. It’s that honesty that has allowed Dylan to overcome so much.

“One hundred percent,” he said.

Dylan shows off his muscles.

Dylan endured the surgeries because he knew each would help bring him closer to the independence he craved.

“I hated it,” he said, “but I had to do it. It helped me walk. It helped me get up in the car and everything I needed to do.”

Dylan wants to get his driver’s license. He wants to get married someday and start a family.

“That’s my ultimate dream,” he said.

He’s hoping to land a job at a local Winn-Dixie, beginning first as a bagger then, hopefully, as a stock clerk.

“I can easily stock shelves,” he said.

A lover of all things cars and trucks, Dylan would ultimately like to work in an auto shop, fixing cars. Maybe own a garage.

He also wants a Chevy Silverado.

“There is a lot he wants to do in life,” Marlena said. “That’s one thing about him, he is driven.”

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

Step Up For Students’ team member Nina Gregory shares a personal story

By GEOFF FOX

For many people, March is a time to enjoy college basketball, reset clocks and bask in the coming of spring.

Camille Gregory, Step Up team member Nina Gregory’s daughter, celebrates her niece Caroline’s first birthday.

It is also Cerebral Palsy Awareness Month – a time to raise understanding about the group of neurological disorders that permanently affect body movement and muscle coordination. In the United States, about 764,000 people have at least one symptom of cerebral palsy.

Cerebral palsy is one of the qualifying diagnoses for the Gardiner Scholarship Program, managed by Step Up For Students, whose scholarship recipients you support.

Nina Gregory, who works in Step Up’s Office of Student Learning, recently spoke about her daughter Camille, who was diagnosed with cerebral palsy as a baby. Doctors told Nina her daughter would probably never walk or talk, but Camille eclipsed those expectations long ago. 

They have a beautiful story of love and perseverance. Please watch Nina share her story. 

 

Please listen to Nina read a book she wrote about her daughter. Flip the pages below.