Highlighting Objects Around the Home

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As my young child with Cortical Visual Impairment (CVI) has become progressively mobile, it has become increasingly important for me to think about what I can do to help her visually orient herself within our home.

You may recall that some months ago I began using washi tape (like this glittery set) to highlight some light switches with pops of sparkly color. This provided a fun visual and fine motor activity of turning light switches on and off while I necessarily carried my daughter, Rosalie, from room to room with me. So, it was only natural for me to start looking around at other things it would make sense to highlight as Rosalie began moving around the house more independently.

Where did I begin? For starters, I gathered my supplies: scissors and tape. Really, that’s all it took!

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Pictured: white scissors and a roll of shiny, red duct tape.

As you will see, I ended up using various kinds of tape on different surfaces – depending on the material, color, and what the purpose of the tape was. Pictured above is a shiny red tape, similar to this one found on Amazon.

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CVI DIY: Adapting Puzzles

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Puzzles are such a great activity! They promote and fine-tune functional vision in conjunction with cognitive and motor skills…and they are never too visually complex for a child with Cortical Visual Impairment (CVI), right?! I mean…wait.

But seriously. Puzzles really are a fantastic activity that can assist with a child’s development (we’re talking visual and shape recognition, concentration, patience, fine motor skills, and more!)…when a child with CVI has access to them.

Every child with CVI has some type of medical history that has caused this brain-based visual impairment (whether that history is fully known or not), so I recognize that some children with CVI may not have physical access to traditional children’s puzzles, but in sharing how I have adapted puzzles for my daughter I am focusing solely on the issue of visual access.

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Celebrating Halloween (CVI style)

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Happy Halloween!

Two of the “10 characteristics of CVI” are color and complexity. This means bright, highly-saturated hues that are solid colors (with little or no patterns) tend to be easier for someone with Cortical Visual Impairment to visually process.

Red is one of the first colors our brains learn to process as infants, so it’s no wonder Elmo is often a favorite of little ones with CVI! He is solid, bright red and easily identifiable with his simple eyes and big, orange nose.

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Pictured: little girl dressed in an Elmo costume, surrounded by 4 Elmo dolls.

Another CVI characteristic is novelty, which means a child with CVI will be drawn to the familiar since new people/places/things are much more challenging to visually process. Someone with CVI cannot simply “look” and learn what something new is; they must learn the distinct, salient features that categorize objects for what they are, which means new things require building a new framework of understanding in the brain…whereas familiar objects are ones the brain has already learned to “see” (process).

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Hello, Instagram!

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Are you on Instagram? Now “Everyday CVI” is! I invite you to follow along for visual announcements and updates about new blog posts (and possibly more). Just search for @everyday.cvi.

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Not on Instagram? No worries! You can always subscribe to notifications about new posts (click on the blog Menu and select “Follow Blog Via Email”) AND/OR follow the Everyday CVI Facebook page. However you follow along, thanks for joining us on our everyday CVI journey!

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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Tactile Sensory Play Activities

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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.

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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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Creating a Felt Wall

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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: 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)

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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

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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. 😉

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? 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, 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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