Where can I find support for parents of kids with CVI?

Joining support groups, such as CVI groups for parents on Facebook, is super helpful. Parents can connect with each other by sharing experiences and asking questions like, “Has anyone else had a child do this?” It creates a supportive space where they can say “I’m going through the same thing” and offer helpful advice like, “Here’s what worked for my child.” It’s a great way for parents to support one another and exchange insights.

It can also help your child if you join groups and communities that have other kids who are experiencing the same thing your child is. Some organizations hold conferences where your child can meet other children who are blind or have CVI, as well as successful adults who can serve as important role models.

Here are some groups that offer support for families and children with CVI:

• CVI NOW at The Perkins School for the Blind, including their downloadable one-pagers on CVI
• CVI Scotland
• Pediatric Cortical Visual Impairment Society
• Little Bear Sees
• CVI Connect
• CVI Journey
• Paths to Literacy CVI
• Everyday CVI
• Myvision.org
• Roman Word Bubbling
• Gabby Wolf YouTube Videos CVI

For more information, see our full article Cerebral/Cortical Visual Impairment (CVI) 101.