Cortical Visual Impairment, or CVI, is the leading cause of visual impairment in babies and children in developed countries. It is a life-long visual impairment related to dysfunction of the brain rather than the eyes. In other words, the eyes work fine but the brain cannot process what it is seeing. There is the expectation that the vision of a child with Cortical Visual Impairment will improve, but only with facilitated adaptations and interventions that are personalized for the child’s current level of visual function. Children with CVI require specialized methods for identification, assess ..read more

Reading books with children (all children) is so important, but it’s equally important to adapt books for children with visual impairments so they can get more from the experience. Adding tactile elements to the pages, such as different fabrics and textures, can add context and make the experience more fun and interesting. With this method, they can use their different senses to learn. Note: making books visually accessible for children with Cortical Visual Impairment (CVI) is a different story—far different from simply adding tactile elements to a book. To adapt a book specifically for ..read more

Help Your Family, Friends, Educators and Medical Providers Understand CVI In this 3-part video series, my daughter’s Early Childhood Vision Consultant, Tara Tompai, answers three important questions: What is Cortical Visual Impairment? What are the signs of Cortical Visual Impairment? How do you treat children with Cortical Visual Impairment? Tara Tompai has her Perkins-Roman CVI Range Endorsement. 1. What is Cortical Visual Impairment (CVI)? Tara Tompai covers the basics for What is CVI? 2. What are the Signs of Cortical Visual Impairment? Tara Tompai discusses some of the causes of Cortical ..read more

Recently, I shared my family’s CVI story on Kaleidoscope: The Cortical Visual Impairment Podcast. The host, Jessica Marquardt is also the mother of a child who has CVI. In my episode, I describe the day during my pregnancy when I learned about my daughter’s complications. We also discuss the highs and lows we’ve experienced since then. Click below to listen to my episode. Visit the Kaleidoscope Podcast website to browse all previous episodes. “As she approached her second month of life, I thought she was making eye contact with me when in reality she was not. Her pediatrician asked if she wa ..read more

A lifelong journey in supporting your child to succeed will come with many moments of hardship. In dealing with these difficult times, external advice from books, videos, or experts will not give you the relief and tools you truly need. Instead, you’ll have to dig deep to find the inner strength and resilience that comes from within. In my family’s journey, we have experienced many ups and downs, perhaps like your own family. It is the resilience we didn’t necessarily know we had that has helped us remain equanimous and continue marching forward. My husband recently wrote a piece about buildin ..read more

Pictured above: Dr. Lotfi B. Merabet My husband and I first met Lotfi Merabet at the 5th Annual Perkins CVI Symposium, but we were aware of his research in neuroplasticity and CVI long before then. He took part in a very interesting panel discussion and we later had the opportunity to speak with him one-on-one. He struck us as a brilliant man, one who was passionate about his work, and who wanted to make a big difference in the lives of children with CVI. We felt that his work and research would impact our daughter’s life in one way or another. Recently, Lotfi Merabet’s research team received ..read more

Krissy Vannoy, Teacher of the Visually Impaired in West Virginia Krissy Vannoy is a Perkins-Roman CVI Endorsed Teacher of the Visually Impaired (TVI) in West Virginia, USA. I recently met Krissy through a Facebook group for Cortical Visual Impairment (CVI). She was generously answering parents’ questions and she was very kind to answer mine as well. I took the opportunity to ask her about the classroom setting and routines for children with CVI. She shared some really great insights and ideas. Thank you, Krissy! This Fireside Chat is my most recent initiative at CVI Journey. Its purpose is to ..read more

A list of inspiring and educational videos about visual impairment and neuroplasticity featuring neuroscientists and other experts such as Lotfi Merabet, David Eagleman and Norman Doidge. For more education and resources, visit our Resources page. 1. Blindness is Just Another Way of Seeing by Lotfi Merabet Blindness has nothing to do with living in the dark. Behind eyes that don’t see is a brain that does see. In fact, blind people use the same visual centers of the brain that sighted people do, and can teach us more about the brain than we think, says Lotfi Merabet. 2. Can We Create New Sens ..read more

A beautiful self-portrait painted by Sebastian Duesing, son of Stephanie Duesing. I recently crossed paths with Stephanie Duesing, author of the newly released book, Eyeless Mind: A Memoir about Seeing and Being Seen. Once I began reading her book, I could not put it down. A true page-turner, especially because it’s written about a topic so near and dear to my heart. It made me laugh and cry. At times, I felt exasperated about the challenges we have to deal with as parents who have children with CVI. I can understand some of her frustrations and reading her words felt as if she were sitting in ..read more

Tara Tompai and my daughter when she was a wee baby. Sometimes the universe puts guiding stars in your path, especially in challenging times. Tara Tompai, my daughter’s Early Childhood Vision Consultant is mine. She instilled in me the confidence that my daughter’s vision would improve and the understanding that there is lots to be done about it. There are strategies and interventions to help children with Cortical Visual Impairment develop their functional vision and they deserve to be given these opportunities every single day. What I have learned by working so closely with Tara is not neces ..read more