It’s a parent’s nightmare: discovering your infant child has a visual impairment. For Rachel Peabody, the discovery started what she describes as a “whirlwind” of confusion, helplessness, and fear. “It was probably the most scared I’ve ever been in my life,” she says. But thanks to the children’s services provided by the Central Association for the Blind and Visually Impaired, Rachel’s fear and uncertainty have been relieved. She’s now filled with optimism, and she’s proud of what her four-year-old daughter Rylie has been able to accomplish through the guidance and compassion of CABVI staff.
Rylie was born with Coloboma, a condition in which parts of an infant’s eyes do not develop properly in utero. Both of Rylie’s retinas were underdeveloped, and the optic nerve of her left eye was also affected. Rachel says that Rylie’s visual impairment was not immediately apparent. “She seemed to track objects, she played with toys, and seemed to be very aware,” Rachel says. “We didn’t notice anything until she was four months old and she developed what they call Nystagmus, where the eyes kind of jolt and dart back and forth.” She mentioned her concern to her pediatrician, who examined Rylie and referred her to a pediatric ophthalmologist. The specialist made the diagnosis, and recommended that Rachel pursue early intervention services through her county. That’s what led Rachel and Rylie to CABVI.
CABVI’s Teacher of the Visually Impaired, Kim Scerbo, helped conduct Rylie’s initial visual assessment. Rylie was six months old at the time, and that first meeting led to an ongoing relationship that has benefitted both Rylie and her family. From the start, Kim was able to change Rachel’s perceptions about Rylie’s condition and to allay her fears. “She broke it down and explained Rylie’s condition in laymen’s terms – and with such optimism,” Rachel says. “It was a huge relief. For every bad story I’d heard, she had a hundred stories of people who had overcome and persevered. I felt more encouraged, more optimistic, less scared.”
Rachel’s confidence was also bolstered by Kim’s caring, proactive approach. Kim began making regular home visits with Rylie, engaging her in activities and working with specialized equipment to help strengthen Rylie’s weaker eye and to teach her how to make the most of her limited vision. Over time, Rylie has developed a close friendship with Kim. “She’s someone that Rylie ultimately respects, she looks up to, she just loves,” Rachel says. “I definitely consider her a part of our family. And it means the world to me to have a resource like CABVI that has people that are so compassionate.”
Now that Rylie has started pre-school, Kim also makes monthly visits to the school to work with Rylie directly, to help Rylie’s teachers better understand her condition, and to show them how they can help with her development. Kim has also introduced more adaptive technologies, and even helped secure a federal grant so the Peabodys could purchase a piece of specialized equipment called a Visio Book. The “book” works sort of like an overhead projector. Objects and images can be placed flat on the book’s base and then projected and magnified on a vertical screen, which is a big help to Rylie as she begins to learn to write. The Visio Book can also magnify distant objects and images, which will be particularly useful once Rylie begins kindergarten.
Rachel says that Kim and CABVI have not only given her hope and confidence, but they’ve inspired courage in Rylie, too. “CABVI has brought a lot of resources to my daughter that have allowed her to be more independent, to explore on her own,” Rachel says. “She really knows no boundaries. It has always been: ‘Push forward. Try and you can do it. And we will be there to help you succeed and we will support you.’” According to Rachel, CABVI’s support is just what the Peabody family needed, and it’s made a big difference. “I definitely don’t think our family would be managing the way we are if CABVI wasn’t a part of our lives. To have someone at that level where they’re like family and you know that they love your child and are looking out for your child is very comforting. I feel grateful to CABVI. I really feel like our family owes them a lot. Everything they’ve done for my daughter has just been a blessing in our lives.”