Amblyopia. Exotropia. Hemianopsia. Nystagmus. Strabismus. Homonymous bilateral field defects. Cortical visual impairment. All are words that describe Jasper’s vision disability. Add to that cognitive, communication, developmental, feeding, fine motor delays, and seizures. Twelve words to describe Jasper’s vision. Simple, right?
What does Jasper see? Doctors, friends, providers, therapists ask this all the time, with strong emphasis on See. It has been two and a half years since Jasper’s diagnosis of cortical visual impairment (CVI) at birth following infant stroke. Responding to their question is still a struggle, where to begin. I do not really know what Jasper sees. All I can do is guess, based on observation. It is not possible to see through his eyes, or to ask him since Jasper does not (yet) talk. The best answer comes from Dr Christine Roman-Lantzy, our expert on cortical visual impairment. Earlier this year she evaluated Jasper. Speaking with her for the first time last summer, I told her, “Everybody says it will be years before we know what he sees.” She replied, “I can tell you right now what he sees.”
Jasper sees what you and I see. Except for Jasper, the world makes as much sense as looking through a kaleidoscope. When out and about, in his stroller, sitting in his car seat, or looking out the back door, he assumes the unfocused gaze of someone who is blind, looking at a complex world that he cannot make sense of, his brain unable to focus on any part of it. As soon as I step out the door to our house, with the whole wide world behind me, I disappear. Jasper knows I am still there, somewhere. Seeing his blank unfocused gaze is heartbreaking every time.
Closer is better. Jasper’s world, the one he can visually attend to, consists of an ever expanding five to ten foot bubble that surrounds him. Closer means less visual complexity – picking out an object against a complicated background. Finding his mom in a crowd of strangers versus finding mom in the kitchen at home. Familiar is easy. There is no place like home. At home Jasper almost seems a typical kid with normal vision. Until we open the door to go outside.
We know he can see light, the neurologists told me. That was the extent of their knowledge about my son’s vision when he came home as a newborn after two weeks in the NICU. Kids with CVI, kids like Jasper, love light. Light gazing. Jasper still light gazes. Not so much that he cannot be distracted. But enough that his teachers at school routinely dim the classroom lights. The teachers graciously claim that low light helps calm all the kids, not just Jasper.
In addition to the challenges of CVI – color preference, movement, latency, visual fields, complexity, light gazing, distance viewing, novelty, visual motor – Jasper has visual field deficits. This means areas of his visual field are missing, blank, gone. Fortunately the eyes work together, forming a single picture to help fill some of the gaps. Based on visual response, Jasper has maybe half of his left visual field, in both eyes. So instead of a visual field that begins at the bridge of the nose and extends to the far side of the face, Jasper’s ends around mid cheek. He compensates by turning his head.
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At a recent visit with our ophthalmologist, I asked what he thought about Jasper’s seeming inability to “see” things like dogs and birds. Jasper can see whatever he wants to see, our doctor replied. But if an object (dog, bird) has no meaning for him, his brain is not going to pick up on it.
Being a cyclist helps me make sense of this aspect of CVI. Prior to Jasper, cycling was my life, it was all I did, all of the time. Daily bike commuting, climbing mountain passes, long distances – up to 200 miles in one fell swoop – and eventually road racing. I rode in the streets. Riding past a car waiting to turn, right in front of the car, I watch the driver, and see the driver not seeing me. I did not register. The driver is not looking for bikes, he is looking for cars – and blind to cyclists. It is similar for Jasper. The world is all around him, but it does not register.
Jasper is becoming increasingly tactile. It was hard seeing this at first, and equating it with low vision, lower than I hoped. In fact, Jasper is using touch to glean more information, creating even bigger fireworks in his developing brain. Small habits, such as touching a certain post on the way up the steps to our back door, have evolved into an elaborate ritual. First touching the mailbox, fence, then running hands along the stairs that go up, up, up until out of Jasper’s reach – touching the post – then making his way to the steps and taking hold of the wooden handrail that has been covered in shiny silver duct tape. Or walking into his classroom at school. Jasper takes his time, shyly peering around the corner, as if playing peek-a-boo. While other kids rush in behind him, Jasper walks in very slowly – uncharacteristically Jasper – feeling the contours of the door frame, touching the kids’ folders, grazing a book sitting on top of the shelf. His hands make their way down to the cubbies below, small fingers exploring the mesh of the plastic bins. Fireworks.
Faces, in their inherent complexity, are an especially difficult visual target for kids with CVI. These first few years, Jasper rarely looks at my face. Or at anyone. It became a self conscious thing and I found myself anxiously making excuses to random strangers who had stopped to admire him, or to congratulate me. It is still a struggle to coax Jasper into looking at his mom’s face first thing in the morning when he is picked up.
Lately Jasper’s tactile curiosity is focused on faces, whether familiar or not. I debate explaining Jasper’s behavior to total strangers, My son is visually impaired… Our ophthalmologist was excited to hear about Jasper’s newfound tactility, That’s a big development in his brain.
This time, the fireworks are mine.
Originally posted June 23, 2013