Aidan shares what it’s like to live with CVI

Watch as Aidan, a teenager with CVI, describes how certain CVI visual behaviors affect his vision use

“What does your child see?” 

This is the question that so many parents of children with CVI want answered. We see the visual behaviors, we see the anxiety, and we see how our kids develop strategies to operate in the world. 

When individuals with CVI share how they see and navigate their world, it provides glimmers of hope and understanding for CVI parents. 

Aidan is a teenager with CVI. He uses his masterful social skills to operate in the world. He asks questions and makes probing comments, all in an effort to function and make sense of his world. Aidan does this with ease and grace. Many children with CVI use their compensatory skills all day, every day, to make up for what they miss visually. Talk about exhausting!

Aidan took part in his own CVI evaluation. The evaluators are Susan Abu-Jaber and Ellen Mazel. The video playlist below includes clips of Aidan describing how certain CVI visual behaviors affect his vision use—the impact of color, light, and motion; form accessibility; difficulty with visual clutter, object and facial recognition; and lower visual field loss. Notice also his nonverbal behaviors—how he looks at lights overhead, rarely looks at the two educators in the room, and how he doesn’t look around his environment.

Individuals with CVI reveal so much without even having to say anything. 

Note: When you press play, the first of the seven short videos will begin. The next video in the series will start immediately after a clip has ended. If you would like to view the playlist on YouTube, click on the title at the top left. To see a list of videos in the playlist, click on the 1/7 icon at the top right. Happy viewing!

A few examples of how Aidan describes his vision:

Every individual with CVI has a unique visual profile. You may find that some of what Aidan shares resonate with your child’s experience. Use Aidan’s videos as a teaching tool for your child’s educational and medical team that can begin the conversation about how your child’s CVI impacts their everyday life. 

Keep the learning going!

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