Help Me to See
During the time I worked as an early childhood vision consultant, I met and worked with many extraordinary children with cortical visual impairment (CVI) which is the leading cause of pediatric vision impairment in first world countries (Merabet B. Lotfi). CVI is a brain based visual impairment where the brain has difficulty understanding the visual information entering through the eyes. CVI can be caused by various factors including head injury, pediatric stroke, periventricular leukomalacia/ periventricular white matter damage, metabolic or chromosomal disorder, structural brain malformation or lack of blood or oxygen to the brain.
Learning a child may have CVI and receiving a diagnosis can sometimes be a confusing process for families as the child can often have a completely normal eye exam or have an eye condition such as a refractive error or an eye that turns in or out, however this does not explain the degree to which the child is unable to use their vision.
In the books, Cortical Visual Impairment: An Approach to Assessment and Intervention 1st and 2nd edition by Dr. Christine Roman-Lantzy it is explained that CVI can be diagnosed if the following are true:
A history of a big or traumatic neurological event. Something happened to the child’s brain causing damage. This is common to all children with CVI.
The child's eye exam does not match their use of vision or their ability to see.
The presence of the 10 characteristic behaviours of CVI which can be identified, assessed and evaluated.
The 10 common behaviourial characteristics of CVI are explained in great depth and detail in Dr. Roman's books, they are:
Difficulty with visual complexity
Difficulty with distance viewing
Visual field preferences
Difficulty with visual novelty
Absence of a visually guided reach
Need for movement
Need for light
Atypical visual reflexes
Learning to See
As I worked with more children and implemented strategies specific to each child and family's needs, I witnessed the children's vision improved. Each child was given a score on the CVI Range, an assessment tool created by Dr. Roman to determine the level of CVI and the best intervention strategies at that time. I quickly learned that consistency and implementing strategies that were meaningful to the child were extremely important to their progress and improvement in use of visual skills. This meant finding ways to infuse opportunities for the child to use their vision throughout the day with much of their most enjoyable time being spent with family.
I created this book for a specific family I worked with as a way to explain to a young girl how her little brother is able to see and what she can do to help him to see more. The book goes through each characteristic describing specifically how it is present in the child's use of vision.
I soon realized this book could also be shared with other family members, teachers or classmates. I was hoping the information would be easily understood and implemented with room for friends and family to be creative and enjoy getting to know all about their little friend's vision, and to go on this journey together. With more people close to the child aware of their visual needs, the child will be provided with more opportunities throughout the day to use their vision to access their world.
Below are images of the pages in the book, feel free to use and share it if you think it may be helpful. The descriptions can of course be changed to suit your child's visual needs. Some families chose to make the book as a photo album so the pages could be easily changed as the child's vision changed.
I hope this will be a useful tool. Please don't hesitate to contact me if you have any questions.
Merabet B. Lotfi, [Webinar]. Retrieved from http://www.perkinselearning.org/videos/webinar/comparing-neuroplastic-changes-ocular-versus-cerebral-causes-visual-impairment
Roman- Lantzy, C. (2018). Cortical Visual Impairment: An Approach to Assessment and Intervention 2nd Edition. New York, NY: AFB Press
Roman – Lantzy, C. (2005). Cortical visual impairment: An Approach to Assessment and Intervention. New York, NY: AFB Press.