‘Drink before you’re thirsty’

Being inside a school classroom all day and sitting still and listening and paying attention and following directions and transitions and remembering to keep your hands to yourself and to be a friend and be kind is challenging for any six year old child. But being in a general education setting all day long and remembering to do all of the above and follow along is different for a child who has cortical visual impairment (CVI), who does not have the same visual access as his peers. Figuring out behavior is a challenge made excessively more difficult when the educational team does not know enough about CVI.

On a few occasions, because of behavior, providers have gently suggested that Jasper be assessed for autism spectrum disorder. But “only if it would help to access services,” as if neurodevelopmental, neurology, occupational therapy, aquatic OT, ophthalmology, orientation and mobility, physical therapy, speech language pathology, vision, craniosacral therapy, and hippotherapy were not enough. Each time, my refusal is the same: “When you find a therapist who knows as much about cortical visual impairment as they do about autism, then we can talk.”

Educating school teams about cortical visual impairment is a never ending process. The educational team sees a child running around a classroom before the start bell rings, and labels the child’s behavior as attention seeking. But the parent, engaged nearby in a brief discussion with the instructional assistant, sees a child with CVI who does not have visual access to anything meaningful to him, especially amidst the chaotic setting of first grade morning arrivals, and so the student takes the opportunity to run around the room. We know that the CVI characteristic of movement helps hold and attract visual attention, and stimulates vision. So moving through the classroom in a complex sensory environment that you cannot make sense of might be the only option. The choices are either move, or shut down.

Kindergarten, the entire year, was all about behavior. When you have a child with CVI, you always consider his cortical visual impairment first. As a parent, you learn to do this instinctively. Where to present an object, how to turn your body so you do not become lost in complexity, how to turn your child away from visual and sensory complexity when you need his attention, how to talk about salient features and use comparative language, all of the time (Roman). But it is easier and faster to label the behavior, and label the child, than it is to try to understand cortical visual impairment at a glance.

When your child is in Phase III CVI – you are in uncharted territory. In Phase III, students use their vision for most tasks (Roman-Lantzy). Remember CVI is not an eye problem, it is a brain problem. And brain problems are exhausting. This means students with CVI will require frequent visual breaks. In my son’s case, his educational team proudly noted that Jasper’s ability to attend to visually demanding classroom work had increased to thirty minutes. Stunning to imagine how his whole brain might be pushed to the brink by the time that half hour is up. Not just the visual task, but performing that task in a classroom filled with twenty plus other children. Students and teacher chatting, raising hands, asking questions, dropping things on the floor, moving across the room to retrieve an item. The walls are crawling with cubes and cubbies and the alphabet and numbers and pictures and stacks of books and bins of crayons and markers and the word Hello in every language you can think of.

Adjusting to the new school year means adjusting that visual break schedule, and revisiting the idea of a student with CVI performing a visual task for a chunk of time. The team is still focused on the behavior. Instead of learning to see CVI, they focus on learning to see the signs of fatigue. Certainly this is a critical skill for any educator or therapist or instructional aide working with a student who has CVI. As the clock ticks away, visual fatigue manifests as an increase in all body movements – it is hard to sit still, he wants to stand up, his body is wiggly, he needs to spin, he pushes his glasses up on top of his head and rubs his eyes with both hands. All good things to know and look for but already it is too late. He is beyond his visual threshold.

When you are a competitive athlete, you learn to take care of yourself. How to train, how to eat, how to sleep, how to drink. ‘Drink before you’re thirsty’ as the saying goes. By the time your body says it is thirsty, it is too late, and you are dehydrated. Recovery will be more difficult and your body is beginning to shut down. It is the same for a child with CVI using his vision at school. Those visual breaks are his hydration. He needs that brain rest, before completing his work and moving on to the next assignment, or navigating his way to the lunchroom with his peers.

Our children with CVI need to drink before they are thirsty.