Perry Twins Achieving Toward Their Dreams
By Andra Bryan Stefanoni
The Perry twins have dreams just like many of their 12-year-old classmates.
Mia wants to become an author.
“I love to read,” she said. “I’m into books about fantasy characters, talking animals, that kind of thing.”
Blaze wants to be a weatherman. Or, perhaps develop apps for mobile devices.
“I love technology,” he said. “It’s pretty awesome.”
They are well on their way, their teachers at Frontenac Junior High say.
But as babies, their father, DJ Perry, worried that such dreams would never be fulfilled. They were born with Retinopathy of prematurity — a disease that occurs in premature babies and causes abnormal blood vessels to grow in the retina, the layer of nerve tissue in the eye that enables us to see. The growth can cause the retina to detach from the back of the eye, leading to blindness.
Between 400 and 600 infants each year in the US become legally blind from the disease.
“It was scary at first,” Perry recalled. “I was thinking, ‘How are they going to survive in society, to grow up and do things?’ As a father, I was thinking about all the things they weren’t going to be able to do. That’s what I was focusing on.”
His worries were unfounded.
“Today, they function in society perfectly,” he said. “They do all the things they want to do, they have great lives, amazing friendships with adults and peers. They touch so many people in so many ways, the way they do what they do.”
“They impress me every single day.”
A range of services
Blaze and Mia have been receiving vision services through Low Incidence Special Education at Greenbush most of their lives. Tammy Warford is a teacher of the visually impaired who has become an extended member of their family, Perry said
“Without Mrs. Warford, I wouldn’t be where I’m at today,” Blaze said. “I wouldn’t know how to use the awesome technology we have. She’s the one who got us started.”
Greenbush provides a range of vision services through Low Incidence Special Education for low vision, blind, and deaf-blind students from birth to age 21.
The vision staff consists of five certified teachers of the visually impaired and two paraeducators, all of whom provide direct and support services at school and in the homes of students. Qualified vision students like Blaze and Mia also receive orientation and mobility services through Greenbush, which covers concepts, skills, and techniques they need to travel safely, efficiently, and confidently through a range of environments and in many situations and conditions.
“They learn how to do daily kinds of things in the community — things a lot of us take for granted,” Warford said. “Going to the store, going to the library, and how to eventually become independent.”
Greenbush also helped the twins learn to read and write Braille.
Blaze and Mia say they would classify themselves as “regular kids.”
“We both play in the band,” Mia said, “and Blaze loves Zombies.”
Each of the last two summers, the twins have participated in the Tech Trek Camp for visually impaired youth — a collaboration between Greenbush Vision Services, the Camp and Retreat Center, and the Midwest Low Vision and Technology Center — and plan to again this year.
They’ve gained confidence in themselves and their abilities, and made meaningful friendships with other visually impaired students.
But there are times it’s evident to both Blaze and Mia that they have special needs, and that some things aren’t as easy for them.
“It’s complicated, trying to cope in life without being able to see people’s expressions,” Mia said. “We have to rely on other things — tone of voice, for example.”
Through it all, Warford is the gateway between the twins, their teachers, and their parents.
“She helps map out the majority and the largest portion of their Individualized Education Plan, their daily activities — she’s amazing at problem solving,” Perry said.
The twins’ iPads weren’t performing as they needed, so Warford facilitated a move to specialized laptops, which made “a huge difference,” Perry said, and she provides frequent reports on what they’re working on and what their next steps will be.
He also credits Calvin Churchwell, who contracts with Greenbush to provide low incidence services, as being instrumental in their success.
“They’re both passionate about their jobs,” Perry said. “I’m not sure anybody else would be able to do what they’ve done. They put their heart into it and it shows.”
Blaze and Mia said they’re happy with the services they’ve received.
“There have been times where I get really stressed out, and she’s good at comforting. I know she cares,” says Mia of Warford.
With the support of Greenbush and other agencies, the school, the school board, and all of the twins’ classmates, Perry also said he doesn’t feel quite so overwhelmed now.
“God decided they would be born to someone on this planet and I would be strong enough to raise them,” he said. “Blaze now jokes about his blindness, and Mia is starting to, so I know they accept it and are strong, too. They’ve embraced it, really.”
The experience not only changed the Perrys’ lives, it changed Warford’s. She hadn’t started out in special education.
“I had a bachelor’s degree in music education and taught music for three years,” she said. “This was not what I envisioned for my future. But when I began working with the twins, and learning along with them, I loved it.”
She earned her master’s in special education as a result.
‘A learning experience’
Having visually impaired children has been a learning experience for Perry, too, he said.
“I hadn’t been around anyone blind in my youth. I had no reference. Now we’re part of a whole community. We have friends from five or six states and we’re part of a huge network.”
“It’s made me more of a whole person. I see that same thing with the students they go to class with. Students around them are more compassionate to those with a disability, an injury,” he said.
A few minutes before their lunch period beings each day, for example, two students escort the twins to the cafeteria and go through the line with trays, asking them which vegetables they’d like from the salad bar, and whether they’d like chocolate milk or white.
But once seated at the cafeteria table, their special needs are forgotten, and the four chat about their school day, extracurricular activities and the fact that they’re glad it’s Corndog Day.
“It allows me to rest easy knowing they’re getting an excellent education and great peer interaction in the same classroom with people they’ll be adults with,” Perry said.
“We explain to them both that the sky’s the limit,” Perry said. “We showed them some YouTube videos about blind people — mayors, athletes — and remind them there are people out there who do big-time jobs. They can be anything they want to be.”