“We are going to change how our children with CVI see the world”

The fourth annual CVI Symposium was inspiring and hopeful from the outset, with the remarks of Ed Bosso, Perkins’ president: “Not only are we going to change the world, we are going to change how our children with CVI see the world.” I cannot help but add – we are going to make sure the world starts seeing our kids with cortical visual impairment (CVI), the leading cause of visual impairment in children in the US. The auditorium was filled with parents, providers, researchers and included Lotfi Merabet, Christine Roman-Lantzy, and Ellen Mazel.

CVI momsIt was heartening to see unfamiliar people there wearing Start Seeing CVI t-shirts, in addition to a group of us CVI moms who are fiercely advocating for systems change when it comes to serving all of our kids with CVI. If you have Start Seeing CVI t-shirt envy, you can purchase one here (half of proceeds are donated to the Pediatric CVI Society).

Dr Lotfi Merabet is currently the only researcher who is studying cortical/cerebral visual impairment and provided an update on examining neuroplastic change. When discussing his work, Dr Merabet always frames CVI as public health crisis. CVI families and others have known this for years, we feel the “crisis” every single day of our lives – every time we meet a new therapist or provider, every time we attend an IEP meeting – every time we drop our children off at school. He was equally optimistic about the growing advocacy and awareness movement around CVI and described this time as “not the beginning of the end, but the end of the beginning.” If you do not follow Dr Merabet’s CVI Neuroplasticity Research Group on Facebook, you should.

crisisChristine Roman-Lantzy presented on Best Practices in CVI. A good way to describe her work to providers and educational teams is – she literally wrote the book on cortical visual impairment. Expanding on the work of Dr James Jan, she developed the only assessment and educational approach we have for our kids with CVI, the CVI Range. Dr Roman has been advocating for children with CVI – including my own – for years. She took the public health crisis description one step further when she said, “CVI is the public health crisis… that nobody has heard of.”

Ellen Mazel is a TVI and author of the CVI Teacher blog. Ellen teaches the only graduate level, dedicated CVI course in the entire country, at the University of Massachusetts Boston. Last year, UMass made the CVI course a requirement for all TVI, O&M and Rehabilitation teacher candidates. Ellen presented on CVI Teaching Strategies. Early on, she clarified that all theorists discussing CVI are now using the language of the CVI ten characteristics and visual behaviors (Roman-Lantzy). When working with students who have CVI, she says, “presume competence.”

IMG_7082As a CVI parent who travels to multiple conferences and trainings and workshops on cortical visual impairment each year, what is always most overwhelming is the rare feeling of just being in a place where other people understand your child.

The CVI Symposium was recorded and will be available as a webinar on Perkins’ elearning website.

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