Author: Stephanie Kung

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Instagram Announcement

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Does she “look” blind now??

This was originally published on the Everyday CVI Facebook page,Β 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.”


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 ofΒ EverydayCVI.comΒ 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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Tactile Sensory Play Activities

I have never been much of one to label my parenting “style” or “methodology,” but I suppose if IΒ 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 areΒ 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.

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Introductory CVI Reading (For Parents or Professionals)

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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Creating a Felt Wall

As my daughter with Cortical Visual Impairment (CVI) has progressed further into Phase II, I find myself constantly searching for new ways to integrate her vision with everyday functions. There are all kinds of ways to visually adapt Rosalie’s everyday “free play” time (creating defined spaces, providing toys and an environment that address the ten characteristics of CVI, etc.), but one tool I created specifically for this purpose is:Β a felt wall.

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What is a “felt wall,” you ask? Well, it’s exactly what it sounds like. Instead of making a “felt board,” I selected part of a wall in our play room to cover with felt. This provides a sturdy back-drop on which I can display any number of felt pieces.

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“Rosalie, Small but Mighty” (Interview on Kaleidoscope: The Cortical Visual Impairment Podcast)

Do you know Parent CVI Advocate Jessica Marquardt? If not, you should! In 2018 she launched Kaleidoscope: The Cortical Visual Impairment Podcast, where she discusses the growing public health crisis within the world of vision impairments (spoiler alert: it’s CVI!), sharing stories of neuroplasticity and visual perception.

Kaleidoscope

Jessica launched this much-needed podcast the same month my daughter, Rosalie, was diagnosed with CVI – so listening to Kaleidoscope has been an integral part of my journey as a CVI parent. I have eagerly devoured each new episode, taking heart that I am not alone and gaining insight, tips, and inspiration from others directly impacted by CVI. When Jessica asked if I would sit for an interview I felt honored and, of course, said yes!

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Highlighting Light Switches

My daughter with Cortical Visual Impairment (CVI) recently TURNED OFF HER BEDROOM LIGHT SWITCH FOR THE VERY FIRST TIME! To be clear, I was holding Rosalie in my arms when she flipped the switch – so no, my child who is not yet fully mobile did not suddenly learn to climb. πŸ˜‰

This seemingly “simple” task is often taken for granted by parents of typically-developing children, but the rest of us probably know and understand what an accomplishment this is for a child with a vision impairment (and the delayed fine motor skills that result from it).

How did we achieve this particular skill?Β Well, it started with me thinking of things her brothers liked to do for fun at her age and then creating a goal to help her build the functional vision and fine motor skills to do one of those activities: flipping light switches up and down!

Rosalie is achieving milestones at her own pace,Β but her desire (and need) for constant play and learning is no less than it is for my other children. I knew that turning off her bedroom light switch would not be as “simple” as it was for her brothers, but I made it a goal nonetheless. And not only are light switches fun, but turning them on or off is a useful everyday life skill. Win-win!

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