I recently had the opportunity to learn about Cortical Visual Impairment from the guru herself, Christine Roman Lantzy. What I did not know was that this experience was going to change my life. I spent 7 hours a day for 2 weeks in her presence, hanging on every word she was teaching and taking in all of her wisdom and guidance. I walked out at the end of the 2 weeks feeling pumped to make a difference.
I am inspired to do better for children with CVI and spreading the word on what it is. I feel like these kids are the ones “left behind” in the system. I don’t think people are aware of the possible diagnosis and then I don’t think people know that there is hope and that their children’s vision can improve.
The prevalence of CVI is 10,5% in children who have developmental delays. So… what is it exactly? CVI is “A congenital or acquired brain-based visual impairment with onset in childhood, unexplained by an ocular disorder, and associated with unique visual and behavioral characteristics.” How I understand the diagnosis now is that you have a child with no “eye issues” but they can’t see. They need help to develop their vision the same way in which a child develops his motor skills, step by step. They need assistance because visual function does not come to them naturally like with normal developing children. They will be able to see and use their vision functionally once given the opportunity and assistance to develop it.
With this in mind, I want to tell you about a video we watched of a child who seemed to have severe Autism. The behaviours I observed were hand flapping, rocking, no verbal responses, no acknowledgement of people around him, humming etc. I then watched how this child becomes completely engaging when his environment was controlled and was then able to focus and learn in front of my very eyes. Whether or not this child had the diagnosis of Autism was not revealed, but I did notice a massive difference in the child’s ability to regulate and learn when the principles of CVI were applied. I can’t imagine that there is a mom out there who would not like to give the child the benefit of the doubt and make life a little less stressful and more organized for her child if this is the case.
In another video, I watched a physically disabled child with no speech, fall asleep in class, not participating in learning and adults giving up on teaching her. The environment was not conducive to her learning, and she was unable to communicate her needs. She was diagnosed with CVI in her teens and started intervention (I am using this word just because I don’t know what else to call it, although Christine does not think of this as treatment or intervention), 4 years later she is able to read some words, communicate her needs and learn. She is engaging with her family and managing to find objects around the house.
I think there is a lot of hope for children who are diagnosed with CVI, but parents and professionals are uneducated and do not know how to help.
I by no means think I know everything there is to know, but I do know that it is time to start trying to make a difference. These children need our help, and the parents need our love and guidance. If we spread the word around CVI, more people will become aware and we can start improving lives.
I feel like we owe it to our children to advocate this and help improve functional vision.