If not for CVI conferencees, trainings and assessments, this CVI mom would never go anywhere. My son has been in Phase III CVI (Roman-Lantzy) for more than a year. Now the goal is to learn as much as possible about Phase III, what that means, and how best to support him, especially as a student with CVI in the general education setting. Watching my son progress along the CVI Range has been everything from exhilirating to gruelling. Being in Phase III is sort of like slowing down as you near the end of the road. But knowing you will never quite reach the end. And so last spring I attended a two day workshop on Phase III CVI at Perkins School for the Blind, taught by Christine Roman-Lantzy.
The training seemed a full house and although I knew a few of the attendees beforehand, nothing prepared me for the emotion I felt in that room. As a parent of a child with CVI, I have navigated the way for my son and myself for more than six years. In that time, I have explained CVI and what my son sees to countless education, medical, and therapy professionals, to my frustration. Of the dozens of providers who have worked with my son, only a few had more than a superificial understanding of cortical visual impairment – most had not heard of CVI at all. It is endlessly frustrating, heartbreaking for parents to go through this time and time again, as providers shift and move on, as your child ages out of one program and into another. I have shed tears over losing an occupational therapist who was not only familiar with CVI, but sought out my input, took that input seriously, and was willing to learn more about both CVI and my son.
The room at the Phase III CVI training was filled with rock stars. Ellen Mazel, who writes the CVI Teacher blog, one of the most reliable CVI resources I know of, and teaches the CVI course at University of Massachusetts Boston. Diane Sheline, a TVI from Texas who has a book and website called Strategy to See. Matt Tietjen, whose work on Complexity, including sensory complexity, and image assessment, is so relevant to my son in Phase III. Introductions were made, and in addition to TVIs, there were also O&Ms, OTs and speech therapists in the room. Besides myself, there were two other parents present. The collective knowledge, understanding and passion around CVI was overwhelming. In all this time, in the six years since my son was born and diagnosed with CVI at one week old following infant stroke, I had never been in such a place. There was not a single person there to whom I had to explain cortical visual impairment, or my son, or what he sees. It was moving and powerful and emotional and why couldn’t it be this way everywhere? Why is it necessary to travel across the country to find people who know, understand, and care about my child’s diagnosis?
Much of the workshop content on salient features and comparative language was already familiar, but listening to Dr Roman at length provided a depth of understanding to everything I have gleaned from my own conversations with her. There is so much to learn about CVI and it only takes a single correspondence with Dr Roman for me to know that she understands my son’s vision better than his mom.
During the second day of training, near the end, a joke was made about using the “shiny red pom pom” from Phase I right on in to Phase III CVI, where the focus is on using salient features to identify an object and using comparative language to talk about how that object is and is not like another object (Roman-Lantzy). The visual of the red pompom stayed with me and on the long flight home, I could not stop thinking about it. Discussing salient features and using comparative language had become second nature when communicating with my son, we do this everywhere, all the time. Salient features are the red pom pom of Phase III CVI, I put it together. Once home, tapping out an email to Dr Roman, I shared my epiphany. That is perfect, she replied.