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: 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.

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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. 😉

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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Celebrations and CVI Strategies

We recently celebrated a big milestone in our daughter’s life: she has been surgery-free for an entire year!!! Because Rosalie has a brain condition called hydrocephalus, she had surgery to place a piece of hardware called a shunt (which manages the condition) at two days old. Unfortunately, shunts are notorious for having complications; 40% of shunts fail within a year, 50% fail within two years, and 80% fail within ten years. Rosalie’s first shunt developed an infection and her second malfunctioned. They say the “third time’s the charm,” and we are so happy that this 3rd shunt has lasted an entire YEAR without complications!

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This 1-year “Shuntiversary” called for a celebration – but those of you that have children with Cortical Visual Impairment (CVI) know that parties come with some challenges.

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8+ Beginning Books for CVI

I love (good) books. As a child, I was a huge bookworm. As a mother, I could seriously read to my children nearly all day long if they would let me! I think one of the most personally devastating parts of discovering our daughter’s Cortical Visual Impairment (CVI) diagnosis for me was the realization that reading books with her (and teaching her to read) will likely require a great deal of adaptation – and it simply will not be the same experience as I’ve had with her big brothers. Still, I am filled with hope because some children with CVI can become skilled readers – and even fall in love with literature.

In her (new!) book, Cortical Visual Impairment: Advanced Principles, Dr. Christine Roman-Lantzy writes:

“I now know that some children with CVI will achieve the prerequisites for reading and ultimately become competent readers, while others will follow a different path. But I cannot foresee ahead of time which individuals with CVI will read, so I believe that all children must be provided a path to literacy. Some will use symbol systems that are not word based. Others will learn a discrete set of words that can be used for short passages or functional reading. Still others will become skilled readers who will ultimately read fluently, with comprehension and pleasure…. So I encourage my colleagues to take the risk of believing that your students with CVI are capable of literacy no matter what form it ultimately takes….” (p. 37)

Personally, at this point in time I must choose to believe that Rosalie (my daughter with CVI) can and WILL achieve literacy. Right now she is only 16 months old, so we have a long way to go on a path to literacy – but she takes an interest in 2D images (a skill that typically emerges in Phase II CVI) and is at a great age in regards to neuroplasticity. This is a prime time to read picture books with her and focus on building her repertoire of “known” objects!

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