Aidan’s case was so complex that teachers in public school couldn’t help him.
By BILL WINTER
This is a story about second chances.
This is a story about Zoey, Aidan and Izzy. They are blind and have other medical challenges. They all struggled in public school.
This is a story about their parents, who wanted what’s best for their children.
And this is a story about Perkins School for the Blind – where those children finally got the chance to show the world the amazing potential that was hidden behind their disabilities.
This is a story about Zoey. The odds were stacked against her from birth.
Zoey has a rare genetic condition called Roberts Syndrome. She was born without eyes and is completely blind. Her limbs are underdeveloped, and she relies on a wheelchair to get around.
Zoey grew up in foster homes. She didn’t have a family of her own. That is, until Brenda Brashears and her husband met Zoey at their church’s nursery.
“We just loved her – we loved her immediately,” said Brashears. They adopted Zoey when she was 2 years old, and welcomed her into their family.
Brashears wasn’t daunted by the difficulty of raising a child with multiple disabilities. But as Zoey began attending public school, the challenges became more obvious.
Children like Zoey can struggle in public school. Despite her teachers’ best efforts, Zoey didn’t get the specialized academic support she needed, or the life skills lessons necessary for a child who is blind.
Public school can also be a lonely place for a girl who is different. In the cafeteria, Zoey’s young classmates would walk away while she was talking because they forgot she couldn’t see them. Zoey felt isolated and alone.
Her family turned to Perkins – and that decision changed Zoey’s life.
“It was exactly what Zoey needed,” said Brashears. “The teachers really get to know Zoey as an individual, what her strengths are.
Everybody has helped her with the skills she needs to develop. Everything is a hands-on experience, which is really great. She’s just done amazing!”
At Perkins, Zoey is encouraged to be as independent as possible, which builds her confidence. At home, she proudly shows off the new skills she learns every day in school.
Best of all, Zoey fits in with her classmates. “She’s making friends!” said Brashears, her voice infused with joy. “She has friendships that are real friendships.”
As Zoey, now 13 years old, starts her third year at Perkins, her family looks to the future with new optimism.
“I can’t say enough how much we appreciate everybody at Perkins and all the services Zoey gets,” said Brashears. “We know Zoey is going to continue to thrive. We have a lot of hope now.”
There’s a formal process to determine which school is right for a child like Zoey with a disability, said Ed Bosso, superintendent and executive director of educational programs at Perkins.
When children turn 3, their local school district assembles an IEP (Individualized Education Program) team to create an educational plan customized for each child. The team is made up of teachers, disability professionals and parents.
Federal law guides the process. Children need to receive the least restrictive education, as close to home as possible, ideally in a classroom with non-disabled peers.
“Every child is on their own individual pathway,” said Bosso. “We should place them where their needs are best met.”
This is a story about Aidan. He was a puzzle his public school teachers just couldn’t solve. No matter what they did, they couldn’t help the 12-year-old learn to read and write.
Aidan has CVI – cortical visual impairment. It’s a baffling kind of blindness. Aidan’s eyes work, but his brain can’t interpret that visual information. Because of his CVI, many standard teaching techniques didn’t work for Aidan.
CVI wasn’t Aidan’s only disability. He was born with a brain injury that caused cerebral palsy. He walks with crutches or uses a wheelchair, and some tasks are difficult for him.
His public school teachers tried hard, but Aidan’s twin challenges were too much.
“We had a wonderfully supportive school system, but Aidan’s case was so complex they didn’t know how to really reach him,” said his mother, Debra McNeely. “If it were just the cerebral palsy, they could have easily accommodated Aidan. The vision issues made his case so much more complex.” Aidan struggled in school and started falling behind his sighted classmates.
“He saw his classmates moving on – and he was left behind in a special needs classroom,” said McNeely. “He was depressed, to be honest. He hated going to school.”
Two years ago, Aidan’s parents were able to get him transferred to Perkins, where teachers have experience working with CVI. For them, it’s not a mystery to be solved; it’s a challenge they know how to overcome.
“Aidan actually talks about how the teachers at Perkins know what he needs, know how to adapt things to him,” said McNeely. “They knew how to present information so they could work around his weaknesses.”
Aidan began to make progress in math, social studies and science. And after years of frustration and failure, he finally began to read.
“Aidan still knows he is different, but he’s appreciating that he has other strengths,” said McNeely. “That’s what Perkins has given Aidan, which is helping him find what his strengths are.”
For many children, public schools do a good job of meeting their needs – with help from outside experts as necessary. Perkins provides that kind of support, including braille and O&M (orientation and mobility) teachers, to school districts throughout Massachusetts, Bosso noted.
“We help public schools address the challenges they may have,” he said. “We’re very fortunate we have community programs that have such strong connections with districts.”
However, for some children, Perkins can provide a better range of services, said Bosso.
“Perkins has such an incredible body of expertise and an accessible campus,” he said. “It’s a place where every person understands what it means to have a vision loss, or a vision loss with additional disabilities. The opportunities for our students to learn and grow here is unsurpassed.”
This is a story about Izzy. If you peeked into her classroom, you’d probably see a smile on her face.
But if you had met Izzy a few years ago, you’d have seen a girl banging her head on the floor, screaming with frustration. She barely spoke. She ate with her hands because she didn’t know how to use utensils.
If any child ever needed a second chance, it was Izzy. She was born with a life-threatening heart condition. When she was six days old, she underwent major open-heart surgery. During the procedure, the arteries that sent blood to her brain and eyes were severed.
The complications caused brain damage, seizure disorder and developmental delays. They also left Izzy completely blind in one eye and with limited vision in the other.
Her family lived in Florida at the time, and when Izzy started attending pre-kindergarten classes, the school was unprepared for her.
“When she went to school, nobody was able to understand how her vision was affecting her,” said her mother, Cara Coller.
During her first week at school, Izzy broke her foot because she couldn’t see well enough to walk safely on the playground. After that, a teacher of the visually impaired was assigned to work with Izzy – but only for 30 minutes twice a week. The school couldn’t understand why she didn’t learn.
When Izzy was 6, her family moved to Massachusetts and she started attending Perkins.
In the classroom, teachers adapted lessons to Izzy’s visual limitations, and she began to learn. She was taught basic life skills, like using a knife and fork. She got white cane lessons to improve her mobility, and speech therapy to help her communicate better.
“They have given her the opportunity to show her actual abilities and skills – to unlock what nobody else was able to do,” said Coller.
In the three years since Izzy arrived at Perkins, the change has been remarkable. “She walks with her cane very independently,” said Coller. “She’s dressing herself. She’s learning her colors and letters and numbers.”
As Izzy’s skills grew, her frustration diminished, meltdowns became rarer – and her smile appeared.
“She’s basically a different child now,” said Coller. “She’s happy.”
There’s a reason why children like Izzy thrive at Perkins, said Bosso. Perkins offers the Expanded Core Curriculum, which are essential skills students need for school, work and everyday life.
“It’s all about the independence, the self-advocacy, social engagement, communication – all those skills that every (sighted) child gets by just being in their environment,” he said. “We make sure it’s built into our students’ programs.”
For students like Zoey, Aidan and Izzy, Perkins gave them a second chance to succeed. But each student and family must ultimately write their own success story.
“Parents have to advocate for what’s right for their child,” said Bosso. “For some students, that may be at Perkins.”