This is the year we Start Seeing CVI

This is the year we Start Seeing CVI
This is the year we Start Seeing CVI

As the parent of a young child who has cortical visual impairment (CVI), I have explained my son’s diagnosis to countless providers. When I say¬†providers, we are talking about early childhood educators and interventionists, neurologists, occupational therapists (OT), ophthalmologists, optometrists, orientation and mobility specialists (O&M), pediatricians, physical therapists, special educators, speech language pathologists, and especially teachers of the visually impaired (TVI). Because of the lack of awareness, education, and knowledge of CVI across the board, it has fallen to this CVI mom to educate everybody who works with my son. When you are a parent of a child with CVI, you spend every single day fighting for your child to receive appropriate services, an appropriate education, and access to the curriculum and the world. Continue reading “This is the year we Start Seeing CVI”

CVI Parents have three problems

CVI Parents have three problems
CVI Parents have three problems, photo by Patricia Harrington Simanek

My son was diagnosed with cortical visual impairment (CVI) as a newborn in 2011, before he came home from the children’s hospital neonatal intensive care unit. Like many kids who have CVI, he had a stroke. Or more specifically, hypoxic ischemic encephalopathy, HIE. His birth experience meant absorbing the diagnoses of infant stroke and CVI, as well as the unknown that goes along with that, because CVI is not a stand alone diagnosis. The doctors, neurologists, called it cortical blindness. This was a day or two after hearing the heart breaking words infant stroke for the first time, a phrase that is not comprehensible in the moment. Cortical blindness, the neurologist said. Because his impairment involves the brain, and not the eye itself, there is nothing you can do. Instead the doctor should have said, Because his visual impairment involves the brain – there is so much you can do. This should be the message to all parents whose child receives a diagnosis of CVI. Continue reading “CVI Parents have three problems”