Feb 15 2019 45 mins
When Emma (16) received a cortical visual impairment diagnosis at age four, CVI literature was not widely available. The consensus was “this is just what she has, live with it,” says her mother, Lynn Elko. Her family didn’t know great gains could be made. They didn’t know how to help her learn or meet developmental milestones.
Then Lynn discovered what kids with CVI can accomplish with strategic, appropriate interventions that give them visual access to the world. And that changed everything.
After six months living with appropriate CVI strategies in place, Emma made tremendous progress in many areas, including feeding, communication, social engagement and literacy.
While Emma’s renaissance has overjoyed her family, there is also the heartbreak of not knowing sooner. Over the years they tried ocular approaches, which turned out to be “horrible and so inappropriate,” says Lynn.
“We were trying everything. I think that’s what is so hard, that I missed it. And everyone in the field missed it.”
The system broke down in many places – we hear this story time and again.
“We cannot let other kids be Emma. We cannot let them go without appropriate interventions and services and knowledgeable staff and knowledgeable providers – because there’s hope for our kids. Because they can learn. Because they can make themselves less vulnerable when they make themselves more able. Because they’ll have a better quality of life when they’re given an opportunity to participate in it.”
I couldn’t have put it better myself.
Resources and events we mention:
Fifth Annual Perkins CVI Symposium – July 11-12, 2019, at Perkins School for the Blind in Watertown, MA
Pediatric Cortical Visual Impairment Society Annual Meeting – July 13, 2019 at Perkins
Augmentative and Alternative Communication (AAC)
More on literacy strategies, including bubble words and the importance of color highlighting in Cortical Visual Impairment Advanced Principles by Dr. Christine Roman (2019) and why the iPad is a great tool for CVI on CVI and the iPad
