I never cease to be surprised by the ways in which functional vision operates in individuals who have CVI. Early on, everything I read and experienced told me that the best chance of seeing improvements in functional vision would be limited to the youngest of children. The golden rule in the 1990s was that the first 3 years of life were the time of greatest visual plasticity and the best, maybe only option for the brain to develop, organize, or rewire vision. But as my approach became more organized and as The CVI Range became my reliable method for assessment and support, I began to wonder about all of that.
In 1993, I developed The CVI Range as a protocol to determine the extent of the impact of the 10 visual and behavioral characteristics. I wanted to be accurate and careful when looking at functional vision in children with CVI. But what I never could have imagined was that while using an approach that was both consistent and targeted, I would see the CVI Range scores change. And change they did. I saw a trend of improvement that was undeniable. Something was happening and these changes could not be associated only with young children.
Of course, science now has newer insights into how vision is processed in the brain. Plasticity for developing vision in the brain is believed to go on at least into (and possibly beyond) adolescence. This is great information and creates a sense of cautious optimism. Cautious because with each year that the individual with CVI relies on sensory systems other than vision, the more resistance there may be to use vision as a primary method for learning, both directly and incidentally. Plasticity vs experience…an important partnership that can determine the course of a sensory system such as vision.
This dichotomy creates urgency in me. The clock ticks, time passes, and years go by. What happens when I encounter a student who is a teenager or older but whose functional vision lingers in Phase I or early Phase II? Can a CVI-rich environment produce experiences that improve functional vision even in an individual who, through no fault of the family, has had inefficient CVI programming and therefore, has relied primarily on tactual and auditory learning? Can the wall of resistance to use vision be breached? I think yes.
This week I had the opportunity to re-evaluate an individual who has complex needs including CVI. She began her targeted, CVI-specific journey when she was 15 years old. This young woman has parents who had a sort of “awakening” about CVI but wondered if it was all too little, too late. Though there were many false starts with a series of educational experiences in which teams considered this individual “non-academic”, there was a special force in her life that was more powerful…her mother. This mom found a CVI knowledgeable professional while also educating herself in depth. Together, the two carefully planned home-based instruction in areas others might have imagined ridiculous. These “crazy” plans included every aspect of the life of her daughter and included literacy, math, O&M, self-determination, and leisure. Her AAC device was redesigned to match her CVI Range score & included words and realistic photographic images. And, as the daughter was offered CVI appropriate materials, environments, and language associated with interpretation of visual information, some interesting things happened. The daughter learned to express her thoughts, learned words, interpreted images, and, oh, her functional vision improved.
So, back to her CVI Range re-evaluation. Her current scores place her in high Phase III. This is a cause for celebration and also a cautionary tale for parents and educators. We cannot be certain about plasticity or the fragility of the brains of some of the children for whom we care. But we certainly have control of the experiences we offer to children with CVI. It matters that we see the impact of the characteristics of CVI but just as important that we see the PERSON. They are all capable of benefitting from a proper education. Sadly, more than the neurology of the student, or their age, it is “the soft bigotry of low expectations” (Bush, 2000) that is too often their greatest barrier.