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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.
I have never been much of one to label my parenting “style” or “methodology,” but I suppose if I had to I would say I’m somewhat “Montessori-ish” in the sense that I value hands-on learning activities that foster independence and collaborative learning. I also highly value imaginative free play, which means I spent years avoiding (or at least limiting) toys that produce various lights, music (except for instruments, of which we have many), or sounds…. And then I was blessed with a child with Cortical Visual Impairment (CVI).
Rosalie was exiting Phase I CVI and starting to cross into Phase II the first time we got her official “CVI Range Score” from an endorsed professional (find one near you!), but was still a young baby with delayed motor skills so a lot of what I first implemented involved Phase I strategies to get her looking. LIGHTS, SHINY THINGS, and TOYS THAT LIGHT UP quickly found their way into our home as I resigned myself to (and perhaps grieved a little) the fact that Rosalie’s CVI meant she just would not be a “Montessori learner.”
But you know what is super Montessori and arguably MORE important for children with CVI than for their typically-sighted and/or neurotypical peers? HANDS-ON SENSORY PLAY!
These days I find myself being far more intentional about providing tactile, active learning experiences for Rosalie than I ever was for her big brothers (after all, with typical sight they have access to incidental learning). There are so many ways to tap into your inner-Montessori (if that’s a thing?) and incorporate sensory play, so today I will share just three activities we’ve been doing.
Everyday CVI 