In the bathroom with my son who has CVI


When you are raising a child who has cortical visual impairment (CVI) – words matter. Until a few years ago, using a public restroom with my son was “no big deal.” Then one day we were waiting to use the womens’ bathroom. My son has a disability and, like other moms with young kids, we often use the disabled or “big” stall. This time the “big” stall was taken so we chose a “regular” one and that is when I made a critical mistake that haunts me to this day and said – “Let’s SQUEEZE in!” as we tried to make our way through the narrow metal door. It was the wrong choice of words, “NOOOOOOOOOOOOOO!!!!! NO SQUEEZE IN!!!” Jasper screamed, covering his ears, in a sudden state of pure panic, his body rigid and shaky. Not only did I need to use the bathroom myself but now had to calm my son over some kind of terror that I could not even see, let alone know how to fix.

Waiting outside for the restroom

Ever since then, using a “regular” size stall is a great big deal. Sometimes that means waiting for the “big” stall in a long line of women, repeating, over and over, “Sorry – go ahead – we’re waiting for the big one.” All the while my son’s anxiety and fear and difficulty at simply being in the restroom, grows. The sounds of flushing and water and hand dryers and doors reverberate off of every hard surface of tile and plaster and metal and concrete, echoing and bouncing around endlessly. Finally it is our turn, we go into the “big” stall. “Who should go first, Jasper or mommy?” Asked in the most normal sounding voice you can manage when your child is on the brink of falling apart. He has learned to look for the most important salient feature (Roman-Lantzy) of the toilet, the handle. He looks for it every time. “That toilet is left handed,” he says when the handle is on the left, or, “That toilet is right handed.” Most of the time, the toilet is autoflush, and the anticipation of that flush is terrifying. Even with mommy beside him, covering his ears tightly (“do your potty, mommy will cover your ears”), murmuring reassurances, is not enough to calm his small shaking body. Sometimes he is so worked up, so worried about that flush, he cannot even “go.” Over and over, he is reminded, “pants UP, zip, snap, DOOR!” otherwise he would bolt out of the stall, his pants down around his knees. How do you explain to your child who has CVI the concept that it is socially unacceptable to run out of the bathroom with your pants down?

One night at bedtime we talked about the bathroom. “What does the toilet flush sound like, Jasper?” I asked, thinking he might say something like “a lion’s roar,” “a jet,” “a fast car.” Instead he said simply, “It sounds MEAN.” Mean made so much sense, and gave me a rare, small glimpse into my son’s world.

At those times when the public restroom is empty, I reassure him that nobody else is there. Nobody is going to do autoflush. Nobody is going to use the hand dryer. You do not have to be afraid, little man. Sometimes it helps.

On a cross country flight with my son, during a layover at O’Hare – one of the busiest airports in the world – it was a huge relief to spot a family restroom, an individual room with its own sink, toilet, changing table, and nobody else. Sweet relief. He could not even “go” in the “regular” bathroom. The toilets at O’Hare have the distinction of auto seat covers. That is, a seat cover that automatically refreshes with each flush. Auto seat covers, in addition to the hell of autoflush and auto hand dryers going off all around you, at any moment.

Some CVI moms have figured this out – use a Post It note to cover the autoflush sensor. Or moms simply use their own hand. For a while, we carried Post Its and noise reducing headphones around everywhere. At the hardest times, my hands cover his ears, firmly. “1-2-3-flush!” Pants UP, then OUT!

We will not even talk about airplane bathrooms. My son has flown many, many times. But we are not there yet. We board first, when the airplane is nearly empty, and visit the bathroom to look at it and talk about it and make a plan, in case he has to “go” during the flight. My son is reluctant to even approach the airplane bathroom, hanging back, scared of the Mother of All Toilets. The flush of the airplane toilet seems louder and more forceful than the jet engines themselves. Once in a while you read a news story about an unplanned airplane landing and a family with a child with Autism being forced off the flight. I can tell you right now that if we are ever thrown off of a flight because of my son’s CVI meltdown – the whole world will finally hear the words “cortical visual impairment.” No – my son does not have Autism. My son has cortical visual impairment.

My son’s response to the sensory complexity of the bathroom environment was so extreme, so alarming, it left me feeling helpless and utterly incapable of supporting him. Talking about these experiences with Dr Roman, she took my son’s perspective – the way she always does when it comes to our children who have CVI. He needs to feel some sense of control, she told me. When the toilet has that salient feature, the handle – we count down before flushing, at Dr Roman’s suggestion. “1-2-3…flush!” Recently, a woman in a restroom stall next to us picked up on Jasper’s pending meltdown and from next door I heard her say, “1-2-3-flush!” before flushing. I have no idea who she was. I do not know where she learned “1-2-3-flush” (we had not said it yet). But I was overcome with gratitude for the stranger I could not see in the stall next to us.

As another CVI mom describes it, “The anxiety, the challenges of self regulation, the constant need to communicate through behaviors.” Perfect for our kids with CVI. For us, increasingly, that last part.

Some moms are unaware – as you are when your child’s CVI meltdown comes from out of nowhere – that their child’s bathroom challenges are related to cortical visual impairment. Long ago, it was apparent to me that the ten characteristics of CVI (Roman-Lantzy) apply broadly, beyond vision. Because CVI is about the brain, and not the eye itself (Roman-Lantzy), it affects everything about my son. Novel objects are hard (Roman-Lantzy). But so are new clothes, new environments, new foods, new people, new places, new schools, transitions. In Phase III CVI, novelty is still one of the hardest characteristics for my son. Because he has one brain.

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In the bathroom with my son who has CVI
The Xlerator is the worst

In addition to dogs, cheese, hand shaking, brushing hair, bathroom stalls, flushing, we work on the bathroom sensory experience at occupational therapy (OT). Between private therapists and the school team, our OT “gets” his CVI the best. We have found that OTs have an innate comprehension of CVI. She supports Jasper, reminds him to breathe, she can even get him to wear a life vest. Only recently, under the right conditions – an “out of order sign,” few people around, reduced flush threat – will my son use a “regular” stall. She has given him a mantra – “III CAAAANNN DO-IT!” And he uses it, mostly at school, and in the restroom, environments that are hard for him. Other women waiting in line smile when they hear him – “III CAAAANNN DO-IT!” His social story book covers all of the above, and more. In the last two years, we have removed one or two pages.


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