This blog is part of a series of articles on CVI. For more information, What is Cortical Visual Impairment? offers a good introduction to CVI. To learn about CVI Schedules, read Making progress with vision using a CVI Schedule.
I am fortunate to be part of an amazing network of parents and professionals devoted to improving the lives of children with CVI, called the Pediatric Cortical Visual Impairment Society. Many parents are willing to share their experiences with others who have just received a diagnosis of CVI through online forums, such as the Cortical Visual Impairment Awareness Facebook group. One of the most common questions in this group is a variation of this question: “I just found out my child has CVI. Here is there story. Will they improve?” The expectation of improvement is one of the guiding principles of CVI, and with the right assessment and intervention, improvement is very likely. I think something parents are really thinking about when they pose this question is, What does the future hold for my child once their vision improves?
CVI is assessed using The CVI Range, which considers the child’s visual skills in light of ten visual characteristics associated with CVI. The result of this assessment is not a single number, but a range of two scores that are determined by thinking about vision from two different perspectives—both comparing all characteristics at a given score, and considering the impact of each characteristic independently. This helps ensure accuracy in scoring and provides more opportunity to capture information about the child’s behavior. The Range scores are further divided into three Phases, which can help parents translate the numerical score into a plan of action. We use these phases to develop interventions that are just at the child’s emerging level of vision, and also think about the skills we think they can acquire next.
In Phase I, children have a score of between 0 and 3. In this phase the child primarily does not use vision as her method of accessing the world, and opportunities to use vision have to be adapted by ensuring the viewed object has adequate light and color, reducing the complexity of the object and the background, and providing enough time for the child to notice and process what she is seeing. The focus of intervention in Phase I is purely on building visual behaviors, and supporting the child as they begin to understand they can use their vision to learn more about the world. I also think of this as a time to build the child’s internal “Google search engine.” She is learning that some objects she sees far more frequently than others, and that those familiar objects are important to her life, such as her spoon, her bottle, and her mother’s face. These memories will lay the groundwork for continued visual development, so that she can recognize these most important objects even if they have a slightly different shape, are viewed from a different angle, or they are crowded by other objects in the background.
As the child’s vision improves, and her Range score increases to between 3 and 7, she enters into Phase II. In this phase, she is realizing that the can interact with objects around her by reaching for them and moving towards them. She is also learning what will happen when she interacts with toys and activities. Within Phase II, children establish a wide range of visual preferences, and they begin to understand the function of things around them, beyond just knowing their shape. Children begin to engage in comparative thought, considering how some objects are similar and different based on their features and function. We support this by adding verbal descriptions of the salient visual features of things we present, so that the child has more information to work with as they make memories about what they see. For example, a sippy cup and a bowl are both round containers that hold food items, but the curvy handles of the sippy cup mean it should be picked up and used for drinking. Even if the child doesn’t know what is inside the shorter bowl without handles, it is probably best approached with a spoon, a fork, or fingers. By teaching the salient features of these containers and helping the child compare them, we are giving her information about what to expect as she begins to eat. This explicit emphasis on how things function helps support the cognitive development that occurs implicitly for children who are not visually impaired.
When the child’s Range score moves to 7 and above, they are in Phase III, in which they are continuing to refine visual behaviors. Children in Phase III use their vision consistently throughout most of the day. They are constantly comparing what they see to what they already know, and can process enough visual complexity to read print as a literacy medium. To the casual observer, these children initially may not even seem visually impaired. However, they still need an incredible amount of support. Bright color is still used the draw their attention to important features of things they are learning in school, and backlit displays (such as a tablet or computer screen) add light to two-dimensional images that would otherwise be viewed on paper. Because children in Phase III use their vision for so many hours a day, they are very susceptible to visual fatigue and feeling overwhelmed, which may look like frustration, apparent boredom, or disinterest, so they should have many opportunities to take visual breaks throughout the day. While some characteristics such as movement and latency may “take a backseat” in this Phase, others such as complexity, distance, and novelty will still need to be accommodated for through careful planning with the student’s teaching team. For example, children in Phase III may be able to work on a math problem, but have more success when colored highlighting helps them view the rows and columns of the problem. They may be able to write responses in a “fill in the blank” worksheet, but will stay organized if words lines of text are spaced far apart, and highlighting indicates where the “blanks” are.
The most important thing that sets CVI apart from other conditions is that children with CVI have an expectation of improvement. For many, many children who receive appropriate assessment and interventions tailored to the 10 characteristics, parents report dramatic improvement in visual function. In their chapter on Neuroplasticity, in Vision and the Brain, vision researchers Catteno and Merabet write:
...It is highly likely that in children with damage to the visual brain, training that is carefully matched to the child’s profile, and that the child enjoys, wishes to join in, and is spontaneously driven to complete, will enhance intact functions and redeploy other higher functioning brain areas to adapt additional compensatory abilities through neuroplasticity (Cateno and Marabet, in Lueck and Dutton, 2015).
In other words, when children are given motivating activities that are accommodated to their current level of visual function, their brains can change to improve how they process what they see. Children who routinely present with little to no visual attention without significant accommodations can gradually increase the complexity of things they are able to view, while decreasing the degree of accommodations they need to have visual access. For families of children in Phase I, the prospects of getting through a school day primarily on vision may seem far off, but this has been the reality for many children with CVI who have progressed through the Range. Improvements in vision create access for children to a world of cognitive and motor development that makes what seems impossible not only possible, but likely. This happens best when accommodations for vision, based on a CVI Range assessment, are integrated into many activities across the whole day.
For more information, check out:
Roman-Lantzy, C. Cortical visual impairment: An approach to assessment and intervention (Second ed.). New York, NY: American Foundation for the Blind Press, 2018.
Lueck, Amanda Hall, and Gordon Dutton. Vision and the Brain: Understanding Cerebral Visual Impairment in Children. American Foundation for the Blind Press, 2015.