Is improving vision enough for a child with CVI?
No. Of course not. Please don’t get me wrong, improving functional vision is really quite important. I talk about it all the time. I think it is critical. In fact, every provider who works with children who have CVI should have an expectation of improving vision. Not a wish or a hope or a notion, but an expectation of improving functional vision.
For a number of years, I described improving vision into high Phase III as the endpoint. I would emphasize the need for CVI Range scores to continually improve until every child with CVI ultimately attains Phase III CVI status. A lofty goal, yes, but one that I believed raised the expectation for educators including me. Then, somehow I began to realize that individuals with CVI who reached Phase III had some special abilities. They were able to not just look but to understand what they were looking at. Sometimes, children who were in or approaching Phase III could associate a word with an associated target. I noticed that they could compare a new concept with one that they already knew. They weren’t just looking, they were understanding what they saw. It was at that point that I realized that seeing, language, and cognition have a synergistic relationship.
So, my next steps were to analyze the key factors that helped an individual with CVI begin to actually understand what they were looking at. Clearly, adaptations to materials were the first step. If a child with CVI does not first have access to visual materials, environments & interactions, then the rest is lost. I rely on scores derived from The CVI Range to guide the process of the necessary adaptations for each child. Then, I must help the child with CVI begin to disassemble the visual “kaleidoscope” using specific teaching methods. I have to help that individual learn to identify the defining features of a visual target and pair these salient features with language that is succinct and consistent. In other words, it is not enough to merely look at an image or object that is “cat”; it is mandatory that the child have a way to look at the novel image, recognize critical details, and confirm that, for example, the presence of triangle-shaped ears & whiskers likely indicates that the image or object is a cat.
Competence in integrating the use of vision with learning becomes pretty clear when reading IEP goals written for students with CVI. In fact, the words in the vision portions of the IEP tend to either make my heart light or filled with dread. For example, when I read that that a child with CVI is expected to “learn to visually track an object 180 degrees”…dread. When I read that a child with CVI is expected to “learn to look at themselves in a mirror”…dread. When I read that a child with CVI is expected to “learn to look at complex pictures”…dread. When I read that a child with CVI is expected to “look at high contrast, novel materials”…dread. On the up-side, these goals at least indicate that the child has some degree of direct vision service.
Competence in working with children who have CVI may be far more complex than the children themselves. The skill set requires the teacher to have a deep understanding of the characteristics of CVI through all three Phases. It requires knowledge of how children learn, birth through young adulthod. It requires the ability to know about the skills necessary for competence in reading, math, communication, positioning, & social development. It requires the ability to engage in the environment, understand the environment, and whenever possible, move independently and safely through it. It requires an understanding of nutrition and anti seizure medicines. It requires the ability to know about and believe in neuroplasticity. It requires the ability to read the cues of a child who cannot tell adults when they are fatigued, frustrated, or hungry. It requires a master teacher and a champion.
So, improvements in functional vision are always a goal. But this goal must be reflected in the skills the child has obtained because of the integration of learning with vision resulting in greater inclusion in their world. It is not a job for sissies but when embraced with knowledge and dedication, the rewards are stupendous.
I get the question all the time, “Is there some place I should live so my child can get a teacher who knows CVI?”. Well, that is a difficult question. It is obvious that most of the intense training based on The CVI Range has hovered around the east coast. But there is no guarantee that moving to Connecticut or Massachusetts will result in your child being properly educated. None the less, parents certainly try this tactic. It is not uncommon for families to maintain two addresses or uproot completely in pursuit of the teacher who embraces their child’s complex needs and actually knows how to teach using the CVI characteristics as the centerpiece of their program. But does such a thing even exist? Is it realistic to expect already overburdened educators to also be experts in the specialized programming needs of children with CVI? Is there a place or tribe of specialists who can reliably teach children with CVI? Where on earth should I suggest parents find such an individual?
This elusive creature, this rare bird does actually exist-we all know the legends and can name their latest habitat and behaviors. It is a thing of beauty, this thing that soars across the landscape of your child’s education and leads the migration of the others to the destination of your child’s future. And, in fact, this breed of CVI specialists have been spotted over the globe though not in large numbers. Perhaps it would be helpful to try to understand them more carefully so we know where one might be found.
The CVIus Adeptus is a creature of strength and unfailing determination. Like it’s relatives who travel thousands of miles a season this creature cannot be blown off track or deterred from the mission it knows to be it’s destiny. CVIus puts in dedicated days and if necessary will stay after school to ensure that the inherent lessons are mastered. It is keenly smart to the point of being cunning. Like its’ relatives, the Raven, the CVIus Adeptus is not naive about people’s intentions and thus builds a team of members who share the goals of the mission to further protect its’ success. Always learning, never static while keeping a watchful eye on the family who in turn add their own learning to benefit the flock. The CVIus Adeptus is fierce, adaptable, intelligent and clever. It is never going to give up. Legend has it that Gene Kranz from the Apollo 13 mission, used the phrase “failure is not an option” after watching this breed at work.
So, back to the question, “Where is the best place for my child with CVI to get an education?”. There is no place. There are only people. My heartfelt advice is to get out your binoculars and carefully scan for that elusive person. You will find one, maybe two. You’ll recognize them. They will find your child a delight. They will intrinsically recognize your expertise. They will agonize over your child’s program and with you as partners, write a clear and powerful IEP. They will listen and hear you. They will lead your team with the determination of a lead bird migrating to the unquestioned destination. They will delight at your child’s successes and never forget your child’s birthday. They will find it exciting to stand in front of the team or in fact the entire school and teach them about CVI. They will sit on the same side of the table with you at meetings. They will investigate plateaus in your child’s learning with the ferosity of J. Edgar Hoover. They will be heartsick when your child’s seizures worsen or when surgery is once again required. They will ask you to come to school and watch you work with their child. They will assess your child fairly and carefully. They will continually take courses on CVI to improve their skills. They will welcome your phone calls on weekends. They will have the ability to apologize.
Of course, the dream is to have CVI experts populate the world in ample numbers. But for now, they may be off the endangered list but likely still a protected species. Only when policymakers see children with CVI as members who have critically unmet needs will we no longer have to work so hard to find the special places with the special breed of people.
In the 1990s I worked at The University of Pittsburgh in the Vision Studies Program. I had the responsibility of planning and providing instruction for future teachers of the visually impaired. Every spring the students were provided an opportunity to visit some of the major agencies associated with our field. One of the stops was The American Foundation for the Blind (AFB), an organization founded in 1921 and the one to which Helen Keller devoted much of her life. My Pitt grad students had the honor of sitting at a conference table with Susan Spungin who was the associate executive director and vice president of AFB. For many years Susan has been recognized as a fierce leader in the field of visual impairment and I was honored when Susan wrote the Foreward to the first edition of Cortical Visual Impairment: An Approach to Assessment & Intervention. Susan is wicked-smart and I have always known her to speak with straightforward honesty. During her meeting with the Pitt students, Susan was discussing a conflict in the field of visual impairment and used a phrase I have never forgotten; she described the futility of the conflict as “rearranging deck chairs on the Titanic”.
That phrase comes to mind so often as I consider the struggle in the field of visual impairment to support the diverse needs of children who have CVI. The struggle does not live within the families of children with CVI but with the policymakers and university professors who continue to define visual impairment from a limited perspective. Children with CVI have a condition that affects the visual processing centers of the brain and their needs are distinctly different than those who have ocular forms of visual impairment. CVI has been identified as the leading cause of visual impairment in developed countries since the 1990s and parents have waited patiently for an appropriate response to their children for over 20 years. But no longer.
A tidal wave of advocacy for children with CVI is in effect. And as we have learned from other major movements in education going back to Brown vs The Board of Education in the 1950’s and the autism awareness movement of the 1980’s, that when parents are mobilized, change is inevitable. There has been a timely eruption of international organizations such as The Pediatric CVI Society and groups on social media such as Start Seeing CVI, CVI Mommafesto, and Little Bear Sees. A podcast called Kaleidoscope provides intimate interviews of the experiences of families who have a child with CVI. Perkins School for the Blind has an eLearning program that offers an array of courses on CVI that have been in high demand by interested providers and parents from all parts of the world. The groundswell is gathering momentum at an impressive rate and it not going to be reversed. The time is now and those of us who are charged with supporting children with CVI would be wise to heed the signs. Right the ship now. Pay attention to the monumental shift in the field of visual impairment. Check out our history, it is not the first major change in how we define visual impairment. And, do not equate CVI with “another condition” like cataracts or glaucoma. CVI is a distinctly different form of visual impairment that requires providers, teacher prep programs, and policymakers to redefine principles, methods, and materials used to provide education for this population. We must re-examine the proportion of pre-service training curriculum that with some exception, currently fails to concentrate on the largest group of children with visual impairment. This is not to suggest that methods for teaching children with ocular blindness or low vision should be set aside. Obviously not. But, attempts to cling hopelessly to the comforts of the status quo will fail. While the field of visual impairment is working so hard to keep the furniture in place, the ship is sinking.
The shift toward a child with CVI representing the “face of visual impairment” is not what many of us were prepared for. But frankly, neither were the families of children with CVI prepared in advance for the numerous and frightening diagnoses they are forced to sort through. We should be grateful, not critical of the parents who have given us this mandate. Disequilibrium is uncomfortable because it shakes our foundation and forces us to make a decision to stay put or to step onto new ground. But it is not the shifting ground that should cause us unrest, it is what we choose to do in response. The response to step in one direction or the other becomes a mirror of our beliefs. In the end, all providers have the opportunity to decide whether parents are simply too demanding, unrealistic, brainwashed, or in denial. Or, we can remember that parents of children with CVI are the same as all of us. They alone know their children with laser clarity and recognize which learning challenges are most rewarding or menial for them. We all want our children to have a full and happy life. Teachers, administrators, therapists, university personnel, and state policymakers would do well to take a moment to ask what we would want if we walked in the shoes of parents whose child has CVI. It is a simple but powerful perspective.
Hello and welcome. Over the years I have had the honor of learning so much from the children, families, and providers I have encountered. In my long history in the field of education, I have provided instructional sessions about the principles of CVI. I have taught methods for conducting The CVI Range. I have shown videos and photos of interventions for individuals with CVI. But, I almost never feel that it is appropriate for me to give my unfiltered opinion. Until now.
This blog will provide me with the opportunity to write about topics that stir something in me. The subjects I select and the points of view will be my own. I will not be declaring truths but rather, writing about my thoughts and observations on a number of issues associated with CVI. I imagine I will be raising more questions than solving problems.
I have been exploring the topic of CVI for so many years and now feel like the time is right for me to go out on a limb and state my heartfelt thoughts about education, advocacy, and policy associated with CVI. Perhaps others will share my perspectives although, agreement with me is not a requirement.