Like many clients of New Hampshire Association for the Blind, Andrea Poirier has lived with vision problems her entire life.
The differentiating factor: no doctor has been able to diagnose her.
“There isn’t a name for it. The doctors are just calling it retinal dystrophy,” Poirier says. “My doctors at Massachusetts Eye and Ear Infirmary have only seen one other case like it.”
Over the years, Poirier’s vision has decreased. Right now, she compares her level of vision to wearing sunglasses outside at night.
Poirier’s daughter, Hannah, 14, also has vision impairment, although it does not appear to be genetic. She developed dysmorphic optic nerves while still in the womb and has been benefitting from Future In Sight’s services since she was in preschool.
New Hampshire Association for the Blind offers services including social work, peer support, technology training, and education support. At first, Hannah was utilizing the early support and services programs. She’s now transitioned to the Association’s other offerings, including the teaching services, which pairs her with a teacher at the Association, and the mobility services, which teach her how to get around with limited sight and transition to a cane, if needed.
“Technology has been huge for her,” says Poirier, adding that she has devices that help her with reading. “If I had the same technology that my daughter has in school, things would be so different for me.”
Hannah’s school district purchased her an iPad that has been incredibly helpful for her work both in and out of the classroom by enlarging print for her and for reading music through a program called SmartMusic. At home, the mother-daughter duo utilizes a CCTV, which allows them to magnify items, broadcasting them onto the television.
For parents of children with vision impairment, Poirier says, “You need to be your child’s biggest advocate. If you don’t advocate for your child, you can’t expect anyone else to.” A large part of this, she says, is educating yourself on the diagnosis and finding an organization like New Hampshire Association for the Blind to help your child adapt to their new lifestyle.
Despite the obvious obstacles that vision impairment brings, it hasn’t brought the family down. Hannah is an avid soccer player and plays percussion in the school band, and her mom is right there watching and cheering her on.
“It could be worse,” she says. “I could have lost my vision earlier in life and never have known what my daughter looks like, see her play soccer, or watch her perform in percussion. I’m grateful every day for the limited vision that I still have.”