Parents: start here
After a CVI diagnosis, most parents become the person who explains it to everyone else. This page gives you three things. A short film to send, a one-page guide to hand over, and a free helper that turns a school email or an education plan into plain words and a reply.
Three things to hand to people
- The film. Send this link to grandparents, sitters and friends.
- The teacher page. Your student has CVI has a three-minute film and a one-page guide to print.
- Your own words. The parent helper reads a school email or an education plan and gives you plain words, questions to ask and a draft reply.
At school
- Ask who the school’s teacher of the visually impaired is, and when they will see your child.
- Ask how the classroom will handle clutter, extra time, noise and steps.
- Bring one page about your child. What they see best, what hides things from them, and what helps.
- Ask for changes in writing. Then they do not depend on one teacher remembering.
At home
- Clear one space. A plain mat or tray, with one thing on it.
- Keep things in the same place. Your child can then find them by memory when seeing is hard.
- Say who you are when you come in.
- Give time. Wait before you help or repeat yourself.
- Watch the clock. Many children with CVI see best when they are rested.
Out and about
- Describe, do not point. “The dog is on your left, by the bench.”
- Name steps and curbs before you reach them.
- Wear something bright so your child can find you in a crowd.
- Go at quiet times when you can. Loud, busy places are the hardest.
You are not alone
Other parents are the best source of ideas. Perkins School for the Blind runs a large parent group called CVI Now, and there are active CVI parent groups on Facebook. This site does not replace them. It gives you things to hand over.
Common questions
- How do I explain CVI so my family believes me?
- Send the film first. It takes under five minutes and shows what words cannot. Then give one concrete example from your own child, such as "she can find her cup on a plain mat, and loses it on the patterned tablecloth".
- What should I ask the school for?
- Ask for an evaluation by a teacher of the visually impaired, and ask how the school will handle clutter, extra time, noise and steps for your child. In the United States these supports are written into an education plan called an IEP. The parent helper on this site can turn your notes into a clear request.
- What can I do at home today?
- Clear one space. Put one toy or one cup on a plain surface. Say your name when you walk in. Give your child time to look before you help. Notice what time of day they see best.
- Does my child need "vision therapy"?
- Be careful with that term. In the United States it usually means eye-exercise programs run by optometrists, and pediatric eye doctors say behavioral vision therapy has not been proven to work. Children with CVI are usually served by a teacher of the visually impaired and an orientation and mobility specialist, through early intervention and school.
Sources
From cviexplained.com/parents/. General information for families and school staff. Not medical or legal advice. CVI is different for every child.