Tag: Learning about CVI

Does she “look” blind now??

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This was originally published on the Everyday CVI Facebook page, but I’ve decided to give it a permanent home here on the blog as well. May it serve to encourage you on your CVI journey and/or help raise awareness about everyday life with CVI.

“But she seems to be doing great.”
“What? She doesn’t look like she has special needs.”
“She doesn’t look blind.”
“Why would she ever need a cane?”
“I don’t understand; can she see? It looks like she does.”

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These are things family, friends, and strangers have said about my daughter that has Cortical Visual Impairment (CVI). It’s beyond frustrating for me to listen to other people comment on things they know nothing about – but that’s the thing: THEY KNOW NOTHING ABOUT IT.

We don’t owe the world explanations, but when I can shed some light on my daughter’s CVI in a constructive way it makes the world around us just a little bit more enlightened, more aware, and potentially even more inclusive. So while the focus of EverydayCVI.com is to share helpful tips and strategies that provide my daughter the visual access to improve her functional vision, today I’m sharing something a little different. It’s a glimpse into our world – not of our visual adaptations, but of what CVI sometimes looks like for our family.

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Introductory CVI Reading (For Parents or Professionals)

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So, someone you know has received a diagnosis of Cortical Visual Impairment (CVI). Or perhaps you suspect a CVI diagnosis, despite medical and/or educational professionals refusing to put a name to the condition…. But what is CVI? And how can you learn about it?

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I wish I could say that the pediatric ophthalmologist sent me home with some medical literature to read through on the day she diagnosed my daughter with CVI. She didn’t.

I wish I could say I was given a pamphlet or card with a list of resources that would teach the basics of what I needed to know. But I wasn’t.

Unlike every other time my daughter has been given a new medical diagnosis, I was sent home empty-handed. No written medical information, no leaflets, no book or website recommendations. Nothing but a diagnosis – and instructions to wait for the state agency to call about setting up vision services once they received the doctor’s referral.

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