My son is visually impaired. Learning to say those words was hard. These days I am more likely to say, My son has a cortical visual impairment (CVI). CVI is a brain based visual impairment that interferes with the ability to make sense of what you are looking at. Visually impaired is an inadequate description of my son’s vision. In seven years I have learned that most of the time, when we say blind or visually impaired, we are not talking about my son who has CVI, or about children who have CVI. When we say visually impaired, we are talking about someone with an ocular impairment, which has to do with the structure of the eye. Most everything that goes along with serving a student with an ocular impairment – accommodations, Braille, early learning, education, the Expanded Core Curriculum (ECC), orientation and mobility (O&M), schools for the blind, teachers of the visually impaired (TVI), university vision teacher preparation programs – has almost nothing to do with a child who has CVI. Continue reading “CVI critical mass and advocacy”
Start Seeing CVI recently featured a graphic as a thank you for the growing number of followers on Facebook. For parents who have a child with Cortical Visual Impairment (CVI), the message is immediate and personal. Since my son’s diagnosis with CVI shortly after his birth in 2011, we have worked with dozens of providers. In that time, of the numerous doctors, specialists, therapists we have seen, most had not heard of CVI. We live in a major metropolitan city – Seattle – and yet I have been asked by neurologists and pediatricians to explain my son’s vision diagnosis, and I have responded to questions such as “So what does he SEE??”
Awareness for parents also needs to grow. Early on, when my son was still an infant, I found the support of other special needs moms in a monthly group. Our commonality was that all of our kids had seizures. After joining the group and talking about my son and CVI, three of the five moms in the group recognized the characteristics of CVI in their own children. All of these kids were older than my son, had multiple disabilities, and no one within their medical, early intervention or therapy teams had ever mentioned Cortical Visual Impairment.
CVI is the leading cause of visual impairment in children in this country, according to the National Institutes of Health. Greater awareness of Cortical Visual Impairment needs to happen now. Increased awareness will bring an increase in diagnoses. In time this will bring an increase in funding and desperately needed research.
So please keep sharing – so that early childhood educators, neurologists, occupational therapists, ophthalmologists, optometrists, orientation & mobility specialists, paraeducators, parents, pediatricians, physical therapists, special educators, speech language pathologists, and teachers of the visually impaired can Start Seeing CVI.
Edmond, JC, and Foroozen, R. Cortical Visual Impairment in Children. https://www.ncbi.nlm.nih.gov/pubmed/17065917.