On Hope and Shame

By the Summer of 2010, I had been a TVI for more than 25 years and had worked with many infants in the early intervention system in my county who had CVI. Some of those babies had been diagnosed, some were not. I recognized CVI through the behavioral characteristics, but often the doctors had not given the families a clear diagnosis. Since I am not a medical doctor, I would sit back, certainly begin interventions, but would try to wait it out for the doctors to ‘see the light’ and finally give the child the diagnosis of Cortical Visual Impairment. Sometimes that happened, often it did not.

Frustrated with my lack of knowledge and comfort level working with these complex babies, I registered for the PA CVI Mentorship Program with Dr. Christine Roman-Lantzy in Pittsburgh, PA. The program required a commitment of two weeks during the summer of 2010, and two weeks the following summer. It was a huge commitment of time not only for myself, but for my my family, as we had recently adopted two children from China. With my husband’s support, (and pleas to return), I set off on what was to be the first step on an amazing, and ongoing quest to learn about CVI, and to better serve children with CVI and their families.

On the very first day of the training, at the Western PA School for Blind Children, Dr. Roman introduced us to the basics of CVI, the characteristics, Phases and Guiding Principles. She shared with us stories of children she had worked with through the years, and her work thus far. As the day wore on, I realized, with a sick feeling in my gut, that I had been doing it wrong. Wrong. So many times wrong. There were so many children I had missed, so many whose characteristics I had let be pushed to the background because of the complex needs that everyone, from team members to medical professionals told me were more important than their vision. I was sick. I was ashamed.

At the end of that first day, Dr. Roman asked if anyone has questions or comments. I raised my hand.

“I am so ashamed,” I told her. “I missed so many kids.”

The women in the room all nodded their heads and chimed in that they felt the same way. We were overwhelmed with the burden of what we had not done, when the information was there, published a few years before by Dr. Roman. We all knew that the children with CVI on our caseloads and in our schools had been steadily increasing, but we had not significantly changed our ways of meeting the needs of those children. We were all ashamed.

Dr. Roman nodded. She understood. She had been there as well. She too had felt ashamed and inadequate as a teacher who could not meet the needs of the growing number of children with CVI.  Like those of us in the room, she had never had instruction on working with these children in her university studies. There were no online classes or webinars, and none of the associations of educators across the country ever breathed a word of this new diagnosis. So, in her quest to learn more, and to better serve the children she was not serving well, she decided to do something about it: She dedicated her career, and her life to studying, researching, and developing the only educational approach and evaluation tool for children with CVI. She shared with us a quote from Maya Angelou “When you know better, you do better.”

‘Shame’ is defined as: a painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior.” While we often think of ‘shame’ and ‘humiliation’ as clearly negatives to be avoided at all costs, the reality is that there is great growth and motivation in both. I was quite ashamed of my lack of knowledge and my lack of action in working with the children on my caseload who had CVI. While there were many reasons why I did not know what I did not know, there were no longer any excuses to continue to do what I had been doing. I used the ‘painful feeling of humiliation or distress’ to change my behavior and to accept with humility my lack of knowledge.  I made a deliberate decision to work to change that, and to never again, to the best of my ability, allow a child I worked with go without appropriate evaluation and interventions. While there was nothing I could do about the children I had served in the past, there was plenty I could do for the children I would serve from that moment forward.

It is now eight years, almost to the day, since the first day of the CVI Mentorship, and there continues to be much to learn about CVI.  We know more today about neuroplasticity, Dr. Roman has published a Second Edition to her book and a third book will be published any day.

Thanks to social media, parents from across the country, and across the world, are joining forces and raising their voices to demand change in the world of education for their children. The number of children with Cortical Visual Impairment continues to grow, but not so the number of university programs that dedicate full courses to preparing future teachers to serve children with CVI.

Professional organizations, University training programs, and agencies that serve the blind and visually impaired are wringing their hands and arguing over the semantics of ‘cerebral versus cortical’ and  ‘evidence based practices’ and generally defending their lack of urgency in changing the status quo to meet the needs of this very real public health crisis. Personalities are held above the needs of the children, with much pushing and shoving to have voices heard that are not willing to effect change. Some professionals are stamping their feet, complaining of large caseloads, and are resisting the need to learn new information. The CVI Range, which is the only educational approach for children with CVI, is being questioned and marginalized. So, instead of using the Range and developing a program based on the educational approach that has been shown to be  reliable  they insist that they need to learn more about ‘evidence based practices’ while children are sitting in classroom across the county, waiting visual access to their world.  Instead of using the ‘shame’ of not being prepared to work with these children, they are turning the blame on those who raise their voices in defense of them.

Their resistance is being matched by the resolve of parents and teachers across the country who are not waiting for the ‘powers-that-be’ to provide services to children with CVI that are ‘equal to those who are considered blind or visually impaired.’ (Statement on Cortical Visual Impairment, APH, 2008). Parents are organizing, and their numbers are growing. Teachers of the Visually Impaired, as well as professionals and therapists, are enrolling in the Pekins-Roman CVI Range Endorsement offered by Perkins School for the Blind. At the time of this writing, there are 70 Endorsed Professionals with over 200 in the queue. The CVI courses offered by Perkins are their most popular courses, with waiting lists needed for each semester. Teachers are asking for help, and parents are asking demanding their children receive the educational support and access to their curriculum they deserve.

As the number of children with CVI diagnosed each day increases, so should the urgency to change the system that has been in place too long. There is real hope, not false hope, that a child diagnosed at an early age and given the appropriate evaluation and interventions will improve visual functioning and realize his or her unique potential. That is the goal for each child who is given the diagnosis of Cortical Visual Impairment.

We need to achieve that goal…or shame on us all.

 



 

 

Guiding Principles

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