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.

 



 

 

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