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 great 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”

Training in CVI should not be optional

From Cortical Visual Impairment, An Approach to Assessment and Intervention, by Christine Roman-Lantzy.

Recently the Chicago Tribune published an article, Programs for visually impaired students face teacher shortage, describing the nation wide shortage of vision teachers to serve students who are blind or visually impaired. Any parent of a child who is visually impaired can attest to the shortage of teachers of the visually impaired (TVIs), and orientation and mobility specialists (O&Ms). But the author missed the bigger story. As any parent of a child with cortical visual impairment (CVI) can tell you, it is almost impossible to find a TVI who is proficient in CVI. Our children with CVI, who often comprise half or more of a TVI’s caseload, are overlooked and poorly served. Continue reading “Training in CVI should not be optional”