Kerry Callahan Photography
The more focussed, important, interesting or repeated an experience is, the stronger the memory will be. Therefore, memories are deeply personal. What one person may remember from an event may be completely different from another person at the same event.
CVI Scotland, Process of Recognition
My six year old son, Mason, was diagnosed with cortical visual impairment at age three. When he was an infant, an MRI showed that he had damage throughout the white matter of his brain. This brain injury is the cause for his CVI, as well as mild cerebral palsy, focal epilepsy, dysarthria, dystonia, and other diagnoses. He was most recently assessed by Dr. Roman and scored a 6.75 on the CVI Range. I was a seasoned special needs parent by the time Mason was diagnosed with CVI, but I still really struggled to understand the diagnosis.
How could my child have a significant visual impairment, when he runs freely and joyfully through our yard to the swing set? He points out birds in the sky and ants on the sidewalk, he loves to build with Legos, and he is skilled at finding hidden items in “I Spy” books. I know now that I may never fully understand CVI, because CVI is as individual and variable as the human brain itself. Still I am committed to always learning more about what CVI means for my child.
In the early days, the CVI Scotland website was enormously helpful to me. In Section 3 of “Understanding CVI,” they explain the process of “Recognition.” In order to recognize what we see, we must have a match for the image stored in our “filing cabinets,” or, to simplify, in our memories. Dr. Roman uses a similar explanation when she discusses tools we can use to help build a child’s visual “data bank.” In the two and a half years since diagnosis, I have come to understand that for my son, CVI means that he is constantly checking and cross-referencing his memory bank. While recognition happens unconsciously for me, it is effortful and exhausting for him.
When we lived in New York, we loved to visit the local farmer’s market on Saturday mornings. The market is set up along one side of the main street in town, along a small green space that followed the sidewalk. If you stand at the start of the sidewalk, the booths are set up on the grass to your left, and the street is to your right. Although this was a complex environment, especially when crowded, it was also familiar. We visited the market nearly every week, for five months out of the year, for the first four years of Mason’s life.
One Saturday, two sections of sidewalk had been replaced, and the area was blocked off with wooden stakes, string, and orange flags, so that the fresh cement could cure. I directed my kiddos around the blocked off area. We walked onto the grass, past a big tree, and then stepped back onto the sidewalk. We had to avoid the area twice — once on our way in, and again as we left. On the following Saturday, the sidewalk had cured and the barriers had been removed, but Mason stopped at the big tree and hesitated. I encouraged him to go ahead, and explained that the sidewalk was “all fixed,” but he stepped onto the grass and walked along next to the sidewalk instead. I marveled at Mason’s memory of the blocked off sidewalk, his use of the tree as a landmark, and his distrust of the cement, even after barriers had been removed. How could one morning, out of dozens of Saturdays, have impacted him so greatly that he now refused to walk our usual path?
More recently, while driving home from an errand, we stopped at a red light at a four-way intersection. To the right of our car was Sterling Greenery, a local nursery that happens to be owned by our next door neighbors.
Mason asked, “Are we home?” I thought he was simply wondering how much longer we’d be in the car, so I assured him we’d be home in about five more minutes.
He replied, “Oh…I thought we were home because I saw the white truck with the green.”
Immediately, I understood what had happened. Our neighbors work long hours running their business. As often as not, they arrive home in a white landscaping truck, which has their company logo (green lettering and a yellow flower) prominently displayed on all sides. Those trucks are often parked on our street, or in our neighbor’s driveway, which can easily be seen from our backyard. We live in suburban New England, so there is nothing unique about our white colonial style home — but not everyone keeps a landscaping truck next door! He could see the logo on a landscaping truck through the car window and a hundred feet away, but he could not see that we were at a busy intersection, not at home in our own driveway.
Haven’t we all experienced these moments of misrecognition? Haven’t we all waved excitedly at a friend in the grocery store, and then watched that friend become a complete stranger who turns and furrows their brow at you in confusion? I recently walked up to what I thought was a garbage can in front of a store in a shopping plaza. I circled it, looking for the door through which to throw a small bag of trash from my car. Why couldn’t I figure out how to use this garbage can? Finally, I realized that this was an unusually large cigarette receptacle. There was no swinging trash door — only small slats through which to flick butts. For me, this was a tiny glimpse of what life is like for my son. I didn’t see the slats right away; my memory told me that this was a garbage can, and so I approached it as such and experienced confusion, frustration, and even a bit of anger when the object was not as I expected. In that moment, I was reliant on memories of other outdoor, public garbage cans; it simply did not occur to me that the object might not actually be a garbage can. Instead, I thought I must work harder to figure out how to use this particular garbage can, and so I circled it again and again.
The garbage can dance began and ended in less than a minute for me. I was able to easily move past my frustration and carry on with my day. I try to imagine, however, what it must be like for my son, who experiences these moments of misrecognition much more often than I do— daily, or even hourly. Sometimes they are small mistakes; he grabs the wrong lunch box, he chooses two pairs of pants and no shirt, or he tries to peel a navel orange, thinking it is a mandarin. He has been worried there’s a fire on a foggy morning and he constantly mixes up the uppercase letters P, R, and K, lowercase e and capital G, and Q, D, and O. Letters are so freaking hard, guys!
Sometimes the mistakes are bigger. He gags and screams after biting into a sandwich he hates, because it was on the green plate he loves. He runs up to his mom, and it isn’t his mom. He thinks he is home, but he is at a four-way intersection on a busy road. When these moments of misrecognition happen for a person with CVI, we must remember that in that moment, memory is stronger, and more accessible, than the available visual information.
It took less than a minute for me to become angry at the (not) garbage can, on a day when I had not misrecognized anything else. When I say that my sweet six year old can be a bit of a grump, what I really should say is that he is weary. He is exhausted from navigating a world that constantly refuses to match up to his expectations. He is sick of being confused, and tired of making mistakes that other people don’t seem to make. Mason’s vision is normal, to him. The way that he sees is the way that he has always seen, and he doesn’t know that other people don’t expend so much energy on sorting out the world.
In Part Two of this post, I’d like to share how we work to support Mason and his unique visual abilities. I will discuss times when a strong verbal memory has actually been an obstacle for him, and I will share the ways we work to expand Mason’s memory bank and strengthen his recognition skills.
Kira Brady lives with her wife, three awesome kids, and a cat named "Zebra," in central Massachusetts. Two of her children have significant disabilities. Kira has a Master's degree in English Language and Literature, and she has worked as an adjunct professor for the past decade. This year, she is homeschooling her fourth grader and two kindergarteners. Kira loves to experiment with gluten-free baking, and is also passionate about vegetable gardening, pretending to be a runner, and reading heartbreakingly lovely novels.