September is the first official CVI Awareness Month. Cortical visual impairment (CVI) has been the leading cause of visual impairment in children in the U.S. since the 1990s. CVI is the public health crisis that you haven’t heard of. For parents of children with cortical visual impairment, every day – every medical appointment, every school meeting, every therapy appointment, every inquiry from a well meaning, random stranger – is about CVI Awareness.
At every appointment you explain both cortical visual impairment, and your child with CVI. How many of us know the familiar response, “I’ve heard of that… I think I worked with a baby with CVI about 20 years ago…” And so it goes.
In addition to physicians, teachers and therapists, I have explained cortical visual impairment to everyone from cashiers in Seattle, to Boston cab drivers. That conversation with the cab driver, a colorful personality and a former pilot, went something like this:
“A veteran friend who’s blind told me, ‘I’m not visually impaired, I’m blind!! You’re visually impaired, you put on a pair of glasses!”
“But what if your visual impairment is a problem with your brain, and not your eyes?” I asked, slowly. And described CVI and my son’s disability. His own daughter had epilepsy. Dropping me off at the airport, he told me: “Parents of kids with special needs are the best people around.” Turns out he was one of those Magical People we so often meet while traveling.
Cortical visual impairment is a brain based impairment that affects visual processing. Children with CVI see what we see, but the brain cannot interpret it (Roman). CVI is different from an ocular impairment or blindness. For children with CVI, with early diagnosis, appropriate assessment and intervention (CVI Range, Roman), vision can improve.
Every time you tell somebody about CVI, you raise awareness. Every time you tell the cashier, or the cab driver, the teacher, the person standing in line next to you, the physician, the barista, the nurse, the therapist, the person walking their dog.
To all of you who care about or work with children with CVI, let’s make every day about CVI Awareness. So that everybody can Start Seeing CVI.