What does my child with CVI see?

Children with CVI experience the world differently from us and differently from each other.

A young girl looking curiously at her fingers outside

What does CVI look like? We don’t really know. What we do know is that children with Cortical Visual Impairment/Cerebral Visual Impairment (CVI) experience the world differently from us and differently from each other. The way they react to the visual world and operate in the visual world helps us understand what they might see. Each child with CVI is unique, but one thing is true: Processing visual information takes effort. It’s tiring. It can sometimes make even the most talkative, outgoing kid clam up. Take it from Burju Sari, who set out on a family trip to Manhattan with her son, Omer. They were excited to go on vacation, but the crowds and sightseeing quickly became too much for the 10-year-old to handle:

My son, Omer, can read, write and see. Sometimes, it’s hard to remember that he still struggles with CVI. But when we go to new places, his vision becomes inconsistent. Our family went to New York City last year on our summer break, and he couldn’t wait to see the Empire State Building. He’d been reading about it and he was so excited. 

We stayed outside the city, so it would be quieter. But we needed to take the subway into Manhattan from New Jersey. Omer was shocked with the subway: the sounds, the smells. We took him onto a car with his pushable chair, and he began putting his head down as we looked out the window, taking photos. He became upset with his brother, asking why he was taking pictures. We showed him what we could see on our phones, and he was amazed.

We struggled with his chair as we left the subway. The elevator didn’t work. We had to carry him up the stairs. It was so loud, and there was so much movement. He put his head down literally the whole time, only listening to us. Finally we said, “Omer, look up! It’s the Empire State Building!’ He looked up, and it was though he wasn’t seeing anything. His brother was saying, ‘Can’t you see this? How can you not see it?’ 

We were brainstorming about what we could do. We wanted it to be a good experience for him. But he could see the building so much better in books than in real life.

We took the elevator to the top, and he was amazed that there were so many floors. Then he was frozen, with the amount of people. He couldn’t look out the window to look down toward the city. 

We went to a restaurant afterward, and he told us he needed to go home to take a nap. He hadn’t taken a nap since he was three! He never admits that he’s tired. He hides it by being talkative and loud. He told us he had a hard time sleeping the night before, but he was really just physically fatigued. Everything was so unexpected for him; the whole day, he hardly spoke a single word.

Next time, we’ll explore a quieter part of the city. I’ll bring noise-canceling headphones. And I’ll remind him that it’s OK to be tired. I’ll normalize it.

Watch Burju’s Family Story: My son’s official CVI diagnosis

Here are some things to keep in mind:

Watch Nicola McDowell, a senior tutor in the Institute of Education at Massey University in New Zealand, discuss her CVI journey:

Connect with moms, dads and families who have children with CVI. Visit our CVI Now Parent Facebook group.

Henry’s love and passion for riding our public transportation trains and buses is going on three years strong now. So we’ve been able to get gifts connected to this love. A few favorites: MBTA train toy models and MBTA t-shirts and sweatshirts. For his recent birthday, a fellow CVI friend got him this train toy with music, lights, and movement, and he loves it. We also got some gifts outside this interest. The DRIVEN toy vehicle line has been great to go back to again and again. Fidgets and sensory toys are always a win because he can get into them immediately: keyboard fidgets and a cheap light-up spinner at Walgreens. We got him the Pop It! Pro last year, and while the light-up game goes a bit too fast for him, he really likes engaging with it. Honestly, the best gift is a train ride to get his favorite dairy-free ice cream.

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