What Cortical Visual Impairment Means For My Daughter

I want to tell you something about this smart and sassy girl right here. 

I’ve talked about various challenges that Evalyn faces each day, including her congenital heart defects, and motor skill and speech delays. I haven’t really talked about specific diagnoses because those labels have not been integral to the messages I have shared. And in the big picture of who my girl is as a person, they do not matter. 

But, today I want to share with you one of her conditions that impacts Evalyn in every way, every single day of her life – Cortical Visual Impairment. 

Cortical Visual Impairment (CVI) is a brain-based visual impairment. What that means is that Evalyn’s eyes are fine and healthy, and the acuity of her vision is basically normal aside from her astigmatism. The problem is with how her brain interprets what she sees.

One good thing about CVI is that with the appropriate interventions Evalyn’s vision can improve, and it has improved tremendously since she was a baby. When she was an infant and was supposed to be tracking objects and making eye contact while feeding, she instead gazed at the sunlight coming in a window. We were worried and lost wondering why this was happening. 

At five months old, we began working with Early Intervention. It was at this time that we were assigned a brilliant Teacher of the Visually Impaired. After observing and working with Evalyn for only a short time, she recognized the signs of Cortical Visual Impairment. Although we did not yet have a medical diagnosis, from then on out the interventions used were those that would help children with CVI. In a short time we saw a huge amount of improvement in the way Evalyn used her vision, and we continue to see improvement all the time.

Although you can’t tell by looking at her, CVI affects every aspect of Evalyn’s life. Things that you and I can see easily, are often inaccessible to her. Although she may be able to see an object if presented on an empty table, if it was moved to a visually complex and cluttered environment, like a messy kitchen counter, she could struggle to see it or possibly not see it at all. 

While Evalyn can read and rocks her sight words, she has difficulty interpreting illustrations and other 2D pictures. I know this sounds counterintuitive, but there is a reason for this. Letters don’t change. An “A” is always an “A”, and a “B” is always a “B”. On the other hand, not all cats look the same and each artist’s interpretation may be slightly different. A brain with CVI struggles with this and needs to be trained to know what makes a cat a cat (i.e. triangle ears, whiskers, long tail, etc). 

Another huge challenge is physically moving through unfamiliar environments. CVI affects vision in the lower visual field which affects depth perception and can cause trouble navigating around things like stairs, curbs, or unexpected objects on the ground. This past school year, Evalyn began receiving Orientation and Mobility lessons to learn to use a long white cane in order to facilitate independence and help her walk safely. 

For a lot of people, seeing the cane is the only way they know that Evalyn has a visual impairment. For Evalyn CVI is an invisible disability without it. 

Every day I continue to learn about Cortical Visual Impairment and new ways that I can help Evalyn visually access the world. I know it is confusing. It is still confusing for me sometimes! Please feel free to ask questions. 

Please check out the following resources if you would like to learn more about CVI.

WEBSITE:

Pediatric Cortical Visual Impairment Society

BLOG:

Start Seeing CVI

PODCAST:

Kaleidoscope: The Cortical Visual Impairment Podcast

BOOKS BY DR. CHRISTINE ROMAN-LANTZY:

Cortical Visual Impairment: An Approach to Assessment and Intervention
Cortical Visual Impairment Advanced Principles

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