Barbara Lopez Avila has a PhD in developmental psychology. But she says she still feels ill-prepared to help her son Logan navigate life with cortical visual impairment (CVI).

How can that be? She writes in a recent blog post for the Pediatric Cortical Visual Impairment Society, “…while CVI is the leading cause of pediatric visual impairment in developed countries, the medical as well as the educational communities are still far behind in knowing how to diagnose and treat CVI. This leaves parents of children with CVI in much uncertainty about what to do to best help their children.”

Barbara recognizes that she can’t do this alone. So, she’s taken an active role in assembling and collaborating with a team of educational and medical providers who know about CVI or, at the very least, are willing to learn about the condition and how it affects her son.

We talk about finding our CVI tribe to accompany us on the journey…