My son, Henry, has cortical/cerebral visual impairment (CVI) and other complex needs. Early in his life, we puzzled over Henry’s vision problems, coupled with developmental delays, feeding issues and behavioral outbursts. His unique visual behaviors were a mystery to his medical and educational providers. Why didn’t he look at me, or recognize me when I walked into the room? Why did he freak out in new environments?
We had so many questions and very few answers.
We saw pediatric ophthalmologists, neurologists, neuro-ophthalmologists, a pediatric genetic ophthalmologist and no one ever mentioned CVI. It wasn’t until Henry was five years old that he got a medical diagnosis of CVI. I knew his vision wasn’t typical, but I didn’t know how significantly visually impaired my child was until after five years of being his mom.
At every level, the system failed Henry, robbing him of years of appropriate interventions and opportunities to build his functional vision so he could access his world.
Henry’s story is common. Children with CVI are under-diagnosed, misdiagnosed and many can’t get access to appropriate medical and educational services. But Perkins is helping change that through CVINow.org — a go-to resource for inclusive, trusted information on CVI.
Support for families and children with CVI
Perkins' CVI workshops and online resources were critical in building my knowledge of CVI, and in understanding how Henry exists in a world not designed for him.
The more I learned, the more I began to truly know my son, and the better I was able to advocate for his needs. Perkins’ webinars showed me how to make everyday tasks more accessible, for example, with intentional use of color, reduced visual clutter and descriptive language.
Perkins’ CVI resources made me a better CVI parent and advocate, and, in turn, helped change the outlook for Henry.
A resource for CVI families
It’s incredible that my personal journey brought me to Perkins as the content and community manager for CVINow.org.
We’ve built CVINow to be an essential website and a dynamic online community for CVI families, where parents can ask questions, discuss topics they care about and access resources they need to navigate their CVI journey.
Children with CVI have a right to an early diagnosis, effective vision services and an appropriate educational program. With CVINow, we are building awareness, cultivating collaboration and creating resources for families and professionals. And this is only the beginning.