Braille Institute helps legally blind local teenager blossom in high school
Dimming eyesight doesn’t block bright future
By Norman Kolpas
At the age of 15, Meghan Downing has already endured a greater life challenge than many other people will face. When she was just 9 years old, she was diagnosed with a form of juvenile macular degeneration that has made her legally blind.
But with the help of a loving family, gifted teachers and support from staff members at the Braille Institute Santa Barbara, she is now happily progressing through high school, making new friends, doing well in her classes, singing in the school choir, and competing on the swim team.
Meghan’s parents, Pearl Francis and Dennis Downing, first became aware of something awry with their daughter’s vision when she was 9 years old.
“Her violin teacher noticed she was having a hard time reading musical notes,” Francis said. “I chalked it up at first to her not paying attention. But then I saw she was sitting closer and closer to the TV. And though she was a good reader, she wasn’t wanting to read.”
Multiple doctor visits soon confirmed that Meghan had Stargardt disease, the most common form of juvenile macular degeneration, a progressively worsening condition that produces such symptoms as blind spots, blurriness, wavy vision, impaired color perception, and delayed adaptation to dimming light. “Six months later,” Francis said, “our daughter was legally blind.”
Stunned by the diagnosis but undeterred, Meghan’s parents resolutely set out to meet the challenge. Francis’ friend Mary Romo, who served as president of the Braille Institute Santa Barbara Auxiliary, encouraged the family to seek help there. Meghan joined the youth program, and a Braille Institute instructor connected the family with the latest technology, including a free digital reader.
“I use that a lot,” said Meghan, now a more avid reader than ever. “It’s awesome.”
Meghan faced new challenges as she approached her freshman year at San Marcos High School, which has more than 2,200 students.
“Leading up to it, she felt a lot of anxiety,” her mother said.
“I cried every day,” Meghan added.
Meghan’s anxieties came to the fore in her first-semester math class. “I thought I was really bad at math,” she said. Despite an in-classroom, closed-circuit television camera trained on teacher Jim Ashlock’s projector screen, combined with a large monitor to help Meghan see his demonstrations, Meghan struggled to keep up.
That’s when her mother had the idea to use VisionSim, a free app developed by Braille Institute for iPhone, iPad, and Android devices to enable people with healthy vision to see the world as it is experienced by people with nine different degenerative eye diseases.
Francis visited Ashlock, launched the app, selected the macular degeneration simulator, and handed her device to the teacher.
In an instant, he said, “I understood what was going on for her. That app gave me a sense of how scary it must have been for Meghan.”
As a result, he adapted the way he wrote things so the CCTV could “get it in the screen so she could see it,” and made other adjustments to enable Meghan to get her work done in a timely fashion without short-changing anyone’s learning experience.
The combined result of Ashlock’s dedication and flexibility and Meghan’s positive attitude was dramatic: She not only grasped all the lessons, but, with extra-credit work, earned a grade above 100 percent in the class.
Today, Meghan is happily progressing through school at San Marcos. In her spare time, the ninth-grader plays violin, guitar and ukulele and takes piano lessons. She is also thinking of attending the prestigious Berklee College of Music in Boston.
In addition, she has volunteered at Braille Institute Santa Barbara Center as part of the 50 hours of public service that earned her a coveted Girl Scouts Silver Award.
“I want to spread awareness of Braille Institute,” Meghan said. “It’s a really supportive environment.”