My journey in the world of Cortical Visual Impairment began more than 26 years ago when, as a young teacher and mother of two children, I was given a referral for a fragile infant who had been born as a result of placenta previa. The anoxic event of her traumatic birth left her with cerebral palsy, significant brain damage, and an initial diagnosis of ‘possible blindness’. Her mother, already devastated that her beautiful child was so medically involved told me on the phone before our first visit: “I don’t know what I will do if she is blind.” I heard the desperation in her voice, and was determined to find any possible chance that this beautiful child could see.
Armed with all the tools a teacher of the visually impaired needs to conduct a Functional Visual Assessment, I went to see Sarah, and her mother Susan, and began to test her visual fields, how her muscles were moving her eyes, pupillary responses-everything an ocular assessment required me to do. And nothing made sense.
Sarah’s visual responses were confusing.. When light was presented to her visual fields, she did not look towards it, even in a dark room. While her pupils clearly reacted to the light, she never once turned towards it. Her mother’s face was somber as her fears were realized. Her daughter could not see. So I did it again, this time paying acute attention to the tiny child, who was sucking contentedly on a pacifier.
Each time the bright red light moved into Sarah’s visual fields, the rhythmic movement of the pacifier halted. At first I thought it was an accident, so I moved the light away, and brought it back. She did it again. And again. Her mother and I exchanged a glance. We had both seen it, and we didn’t rust what we saw. How could she be responding without looking? But hope was born in that moment, and determined to find out what it meant, I began to research.
Unbeknownst to me, in my own state of Pennsylvania, Dr. Christine Roman-Lantzy was working on research that would answer the questions I had about this intriguing eye condition that affected the brain, and not the eyes. The condition had been named ‘Cortical Visual Impairment’ by Dr. James Jan in 1987 and in 2007, Dr. Roman’s published “Cortical Visual Impairment: An Approach to Intervention and Assessment”. In the days before the internet information was not easily accessible, so Dr. Roman’s book was a treasure. Workshops and articles satisfied some of the thirst for knowledge of what to do do with these complicated babies, but they were never enough.
In 2010, almost ten years after evaluating Sarah, I attended the PA CVI Mentorship with Christine Roman. The training, which spanned two weeks in one summer and two weeks the following summer, satisfied my thirst for information, and at the same time, made me hungry for more. With the training completed, I was determined to never stop learning, and to never again question what to do with the increasing number of children on my caseload.
Little Sarah would have been 26 years old this year. She passed away a few years ago, but I carry her memory with me every day. One tiny baby set me on a path to search for knowledge, to answer questions, and to help a mother face the fear and desperation of a devastating diagnosis, and find hope.
Today, I continue to search for new information, new ideas, and new techniques to help families search for answers and find hope in a diagnosis that is still not well known by medical professionals, and still not well learned by teachers in the field. As the numbers of children with Cortical Visual Impairment continue to rise, making it the leading cause of visual impairment across the world, the voices of the families are getting louder and stronger. Often the most knowledgeable members of their children’s teams, these families are advocating for their children with strength and resolve.
In her book, Dr. Roman sets out five CVI Guiding Principles: Precision, Intentionality, Reciprocity, Expectation of Change and Attention to the total Environment., which I will write about in future blogs, as they are so important to understand in our work with children with CVI. For me, the principle of “Expectation of Change” translates into “Hope” for families across the country, and across the world.
Just as I looked into the hopeless face of Sarah’s mother more than 26 years ago, I continue to look into those same faces of families across the country, whose children receive the same diagnosis of Cortical Visual Impairment. Today, however, the hopelessness turns into hope as families are given tools on the complicated journey of CVI. The CVI Range (Roman, 2007) is the valid assessment tool that begins the trip with precision, and with it, sets the child on the road to intentional interventions that affect real change in his or her vision, and map out a future full of hope.
Thanks for joining me on this hope-filled journey.
” I stand in awe of these parents who never give up and who trust the inner voice that tells them their instincts about their child are correct.” Christine Roman-Lantzy, 2018