Tuesday, September 24, 2019

CVI Awareness Month: Does she "look" blind now??


Not only is September Hydrocephalus Awareness Month, but it's ALSO Cortical Visual Impairment Awareness Month! Our September baby, Rosalie, is both a "Hydro Warrior" and a "CVI Warrior," so it's a big time of year in our family!


Cortical Visual Impairment (CVI) is a vision impairment that stems from the visual brain, not the eyes. This might sound confusing, but it's important to understand that our eyesight comes from the communication that occurs between the brain and eyes. In other words, we actually see with our brains!

CVI is about visual interpretation and visual recognition; it is not about acuity (Mazel). People with CVI see what we see, but they cannot interpret it (Roman-Lantzy).

CVI is the leading cause of visual impairment in children (in developed nations) and has been for 20-30+ years...yet barely anyone seems to have heard of it! And even when they have, countless medical professionals and educators (including teachers for the visually impaired) are at a loss for resources, services, and best practices, leaving parents to do much (if not all...) of the research and hard work for their kids.


This lack of awareness and/or education needs to change. Too many children with CVI are left undiagnosed, misdiagnosed, or have been given a diagnosis without the necessary and appropriate educational services; this means too many children with CVI are not being given the opportunity to improve their functional vision and best access the world around them.

Yes, someone with CVI can improve their functional vision! The brain's plasticity (ability to change and form new connections) means we can and should expect improvement - if we give children appropriate interventions and visual adaptations. For more than a year, this is precisely what a large chunk of my time has been devoted to (and why I've barely written anything here at Bluebird Songs...).

Day in and day out, we are working on Rosalie's functional vision (in conjunction with play, feeding, therapies, you get the idea). This is also why I launched a new, separate blog in 2018 (called Everyday CVI) dedicated strictly to sharing our family's everyday CVI strategies.

Most of what I publish on Everyday CVI breaks down the details of the strategies and materials I use, but there is one piece in particular that shares a rare glimpse into what CVI sometimes looks like in our family. Check it out here:

Thank you for reading, spreading the word, and helping raise CVI awareness this September!


Learn more about CVI:

"We are here doing this work not by choice, but by necessity. We are here because the system is failing our kids with CVI. This isn't my calling, this is me fighting for my kid's right to access, to education, to appropriate medical care, to social inclusion. Parents of children with CVI are using their talents and skills to teach others and advocate in order to change the system. But know that all of this work comes from a place of grief, love, pain, and undying hope."
-Rachel Bennett, CVI mom

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