Our CVI Journey

Anne Thompson Heller shares her daughter’s journey with CVI

This was incredibly hard for me to write. It wasn’t difficult because it felt too personal, or because of strong emotions, grief, or memories that came up as I reflected on our experience, but rather, the difficulty in writing about our experience with cortical visual impairment (CVI) seemed to parallel the difficulty we’ve had navigating it. Einstein described my experience with CVI when he said “the more I know, the more I realize how much I don’t know,” which has often felt overwhelming. 

What I do know is that Cortical or Cerebral Visual Impairment (CVI) is a brain based visual impairment caused by head injury, lack of oxygen or blood supply to the brian, hydrocephalus, infection, and certain genetic conditions that damage the visual pathways or processing areas of the brain (National Institute of Health, 2023). We see with our eyes and with our brain and damage to the vision regions of the brain can impact what and how a person sees. Someone with CVI may see best in certain visual fields (upper, lower, left, right, midline, etc.), they may be able to recognize certain colors or objects, they may or may not struggle with dimensions, faces and facial recognition, and lights or movement may result in different degrees of visual attention (CVI NOW, 2024). This is by no means a comprehensive description – just one Mom’s understanding and it perhaps scratches the surface of what some with CVI may experience.

Our daughter, Jordan, is three years old. She has an undiagnosed developmental and epileptic encephalopathy (DEE), which for her includes refractory epilepsy and physical and cognitive disabilities, including CVI. Prior to the onset of her DEE at three months old, we had no concerns with her vision. She was visually tracking objects, making eye contact, and responding to me visually. I’ll never forget the morning when I looked over at her in her bassinet and she looked right at me and smiled. That was one of the first and one of the last times I ever experienced that with her. It was soon after her vision changed and she stopped tracking objects, looking at people, or giving any indication she could see at all.

For me, Jordan’s CVI diagnosis has been a particular sore spot. Because she experiences so many challenges with seizures and other disabilities, this diagnosis has, at times, felt like adding “insult to injury.” One of her providers recently said “we don’t know how much Jordan sees, but we suspect it may be less than we think.” I agreed. Jordan’s CVI is severe and has made learning for her more difficult all around. So much of our learning is processed visually through observation, and with her visual impairment she lacks opportunities for those “incidental life lessons” that occur through observation (CVI Now, 2024;The Cooper Institute, 2024). Jordan didn’t learn to eat solid foods until she was close to two years old  – she wasn’t observing us as we ate, and she needed non-visual learning strategies to help her understand what to do when food was brought to her mouth. CVI continues to impact her learning and daily functioning in many other ways as well. I have watched her reach in the air trying to find a switch toy that she knows is in front of her. I watch her feel for things rather than look at them. She doesn’t show much visual curiosity for her environment but will stop and take pause when she hears something of interest or when she sees something light up around her. Her visual impairment has also made mobility more difficult. It has impacted her balance, her ability to know where she is in space, and limited her willingness to venture off to different rooms around the house. Jordan doesn’t walk, but we’ve recently noticed her scooting around the perimeter of her bedroom and our family room and I think she is working to try and get a “lay of the land.” I can’t be sure, but nevertheless – we will never be redecorating and I am okay with that! Go Jordan! 

I remember being told that CVI can improve. For some it can, but not for everyone and the degree of improvement varies (National Institute of Health, 2023). Jordan’s vision has improved, she can see lights, has shown some visual attention to objects in multiple visual fields, and has even demonstrated an ability to use an eye gaze AAC device – but what and how she sees and interprets from that device is still being explored. 

CVI is a challenge and it is different for every person. I can’t speak to anyone else’s experience, but for me as a parent of a child of multiple disabilities who is a complex learner, it requires an intentional focus and awareness to try and learn what and how our daughter sees, as well as to explore other ways that promote learning. I have felt a tremendous amount of pressure and responsibility to learn about her vision and how best to support her and it has been an emotional ride. There is so much outside of my control as her Mom, so I try and focus on what I can and try to give myself grace in the process. I have read books, asked questions, and attended the 2022 CVI Now Conference (which I highly recommend to those interested – the next one is in 2026). We were fortunate to connect with Perkins School for the Blind and have a full CVI evaluation. The CVI Now Website through Perkins has also been a tremendous and user friendly resource with practical guidance for making our environment more CVI friendly (which I have personally loved). Other resources I’ve found helpful have been Special Achievers, Everyday CVI, and of course – other parents! I heard it said that as CVI parents we are “forging our own paths with our children, to learn what they do or do not have in their ‘visual libraries,’ how best to expand that library, and to try and gage their ‘visual batteries’ to know when they’re visually fatigued.” We’ll keep forging forward and celebrate Jordan as she continues to write her own story.