For brothers and sisters

What CVI is

CVI stands for cerebral visual impairment. Some people say cortical. Either way, it means this:

Seeing happens in two places. Your eyes collect the picture, and your brain puts it together. With CVI, the eyes can be fine, but the brain has trouble putting the picture together.

It isn’t like needing glasses. Glasses fix eyes, and CVI is in the brain.

Dagbjört Andrésdóttir, a grown-up who has CVI, says it’s like a Where’s Waldo? book. Everything is on the page, but finding the one thing you want is really hard. Now imagine every room is a Waldo page, all day.

Why they can’t find things

Seeing is harder for your brother or sister when:

• There’s a lot of stuff around. A messy room, a packed shelf, a busy rug.
• They’re tired. Seeing takes real work for them. After school is often the worst time.
• It’s loud. Sometimes their brain can look or listen, not both.
• Things move fast. A ball, a dog, kids running.
• The place is new. Familiar places are easier.

So yes, they might find their shoes on Monday and not on Tuesday. They’re not faking.

Why they don’t look at you

• Faces can be hard. They might know you by your voice, your hair or your jacket, not your face.
• Some kids listen better when they don’t look. Looking away doesn’t mean they aren’t listening.
• They might walk right past you in a crowd or at pickup. They’re not ignoring you. They just didn’t find you yet.

What you can do

• Say your name. “It’s me, Jake.” Even at home.
• Tell them where things are. “Your shoes are by the front door, on the left.” Not “over there.”
• Don’t move their stuff. They find things by remembering where they are.
• Call out steps. “Step down.”
• Wear something bright when you go somewhere busy together.
• Play games that use sound and touch. Music, Simon Says, building things.
• Explain it to your friends if you want to. Try: “My sister has CVI. Her eyes are fine, but her brain has trouble making sense of what she sees. Say your name when you talk to her.”

You don’t have to help all the time. You’re their brother or sister, not their parent.

It’s fine to feel annoyed

Sometimes CVI is annoying for you too. Plans change because a place is too busy. Your parents spend a lot of time on it. Your brother or sister gets help that you don’t.

It’s fine to feel annoyed, jealous, worried or just tired of it. You can feel that and still love them. Tell a parent, and try saying: “Can we have some time, just us?”

A note for parents

• Give the sibling one-on-one time that isn’t about CVI.
• Watch the film together, then let them ask anything. “I don’t know” is an honest answer.
• Give them the one-sentence explanation for friends.
• Don’t make them the helper by default. Thank them when they do help.
• Let them be annoyed out loud without a lecture.