“What does my child with CVI see?”

These days are more about what does he experience, instead of what does he see
These days are more about what does he experience, instead of what does he see

When your child is diagnosed with cortical visual impairment (CVI), you cannot help but ask, What does my child see? As a parent it was hard to even wrap my brain around the words “cortical visual impairment” – or “cortical blindness” – the first time the neurologist said them. Along with the outdated term cortical blindness came other misinformation such as  “because it involves the brain and not the eye, there is nothing you can do.” Some people like to say that having CVI is like looking through a slice of Swiss cheese, which does not fly because the eyes work together to create the image in your brain and those gaps get filled in. Others claim that the world appears pixellated to people who have CVI, except that your brain is not a computer. It is far easier to simulate an ocular impairment – such as the grossly distorted world of somebody with myopia. Or the blacked out central vision of a person with progressive macular degeneration. But what does a child with CVI see?

In that impossibly difficult time of my son’s first year of life, every provider had the same answer to the question, What does my son see?  “It will be years before we really know what he sees.” Let me tell you, this response was not helpful.

The first time I spoke with Christine Roman-Lantzy was in the summer of 2012. My son had just had strabismus surgery, in an attempt to correct or at least improve his eye alignment. A month after emailing her, she responded, and we scheduled a time to talk by phone. After describing his medical history, recent surgery, his CVI and the nature of his diagnosis, I told her, “Everybody tells me it will be years before we know what he sees.”

“I can tell you right now what he sees,” she began. “He sees what you and I see – but he can’t interpret it.”

He sees what we see, but he can’t interpret it. This helped in describing his vision to the educators who were hearing the words “cortical visual impairment” for the first time. It was easy for my son to visually find me in the kitchen at home (complexity, novelty), and harder for him to find me among the crowd of other caregivers when I picked him up at the end of the school day (complexity, distance, novelty, sensory complexity, not to mention visual fatigue). He would turn his head sharply to his left to find his null spot, and use his right visual field (visual field preference, Roman) in order to visually search for mom.

In seven years of learning about my son’s cortical visual impairment, learning about my son, I have an understanding of how my son sees the world. Movement is still visually compelling. Color has blossomed well beyond preferred color yellow (Roman). Complexity in all of its manifestations will always be challenging. Through my own questions and observations, I can learn what he sees, what he visually recognizes, what he visually interprets.

These days I spend less time thinking about what he sees, and more time thinking about what he experiences. When talking to educational teams, the focus is increasingly on complexity and especially sensory complexity (Roman). Now well into Phase III CVI (Roman), the sensory complexity is the hardest part.

The earliest CVI meltdown happened maybe three years ago, though I did not recognize it at the time. It was the holiday season. It was night time. We went to see the Christmas ships, which are decked out in the brightest lights, and sail around Lake Washington and Puget Sound, stopping to play holiday songs for the crowds of people who gather in the cold. We were not on board the boat, only alongside it, a good distance away, and still the music was uncomfortably loud. To top it off, many people opted to bring along their dogs, a terrifying prospect for my son with CVI. It all seemed manageable until my son lost it and started screaming, all at once, hysterical. Normally able to comfort him, to console him, it was difficult to even get close enough to him to begin to try to make it better. In the end, we moved away from the crowd, the dogs, the lights, the loud. All I could think was, What is he experiencing?

Some time after that, the sensory environment of the bathroom became huge. Automatic flushes, automatic hand dryers, metal doors, sinks, the sound of all of it reverberating off concrete floors and walls.

The hallways at school (“too many people”) and the school bus (ditto). Museums on weekends, airports, busy restaurants. Almost any kind of instrument or music and especially loud music.

Now instead of the constant focus on what do you see? it is about considering the sensory environment, and learning how it affects my son’s sensory experience. How it affects his life, really. It will always be fascinating to know what Jasper makes of an abstract symbol on the cafe window (“no dogs”), or whether he can interpret a smiling face on his favorite Guess Who? game (no).

What do you see? is still important, especially when it comes to school work. But these days what I need most are resources to understand my son’s sensory complexity, his sensory experience. Increasingly these are found in the accounts by adults with CVI on their own sensory experiences. Nicola MacDowell’s blog and video have become essential in trying to comprehend my son’s experiences, wherever we go. Dagbjort is another young woman, diagnosed with CVI in her early twenties, sharing her experience of cortical visual impairment. Also in Phase III CVI, like my son, she has described CVI as mostly about coping with the sensory environment. Or there is My Beautiful Broken Brain by Lotje Sodderland, who documented her experience of hemorrhagic stroke in her thirties and the sensory changes that followed, the before and after that we cannot get from our children with CVI.

There are times when it is possible to reliably guess what Jasper sees, whether he will interpret an abstract symbol on a hiking trail. Or recognize a familiar friend we bump into. Or accurately interpret a scene on a Playmobil box. CVI parents spend a tremendous amount of time and energy preparing our children for every day events and experiences – the bathroom, birthday parties, school, air travel, a trip to the grocery store. But it is nearly impossible to predict his reaction to the sensory environment of each and every place we go. It is hard to know how our children with CVI experience the world.

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