Novelty. Complexity of array. Sensory complexity. Preferred color. These are some of the characteristics of cortical visual impairment. More importantly, these are descriptors for my son’s vision. Such words have become a second language. At times it feels like a secret language. Learning any language is easiest when you are immersed in the culture. Our cultural immersion began with my son’s infant stroke and subsequent diagnosis of cortical visual impairment in 2011. Continue reading “What we talk about when we talk about CVI, part one”
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.