It’s not you, CVI, it’s me.

Listening to music
Listening to music

As my son’s OT session wrapped up, the therapist began talking to him, summarizing what they worked on, reminding him of his homework. “Next week, you’re going to make a ham sandwich with mayonnaise…” As soon as she started talking, my son turned and looked away, down toward the floor. Noticing this, the therapist stopped mid sentence and called his name. In her mind, his looking away meant, He’s not paying attention, he’s not interested, he’s not listening to me. It was easy to see how she had misinterpreted his turning away as a loss of attention and interest. For my son who has cortical visual impairment (CVI), this kind of thing happens on a daily basis.

Calling his name was a way for her to regain his attention – as evidenced by his visual gaze – and continue the conversation. For Jasper, turning away is his way of saying, “You are talking now, so I need to look away so that I can listen.” The interaction was an opportunity to explain the difficulty of looking and listening for a child with CVI. But just as important is the reminder that, as grown ups, we need to be aware of our own expectations around behavior and body language, such as someone turning away from you when you are talking. When I turn or look away, it means I am trying to listen. When we consider the gesture from his CVI perspective, not ours, it makes sense.

As a parent or provider of a child with CVI, this self awareness is so important. Much of the time, the difficulty we grown ups have with behavior is really about us, not them. It is more about our own discomfort, than it is about a child’s perceived behavior.

Jasper’s looking away was misinterpreted because we expect people to face us, look at us, make eye contact, when we are talking. For children, this comes down especially hard and there are grown ups who will still insist that a child look at them. We do this for us, because that is our expectation. Facing each other is how we interact and that is what we attempt to impart to a child. But what if a child with CVI cannot look at your face and listen at the same time? (Or look at your face at all.) Looking and listening is hard, as the senses compete with each other. Faces, in all their complexity are difficult (Roman-Lantzy), let alone while that face is talking. My son with CVI could not look at faces, including his mom’s, until well into Phase III CVI (Roman). When it comes to a child with CVI, set aside your assumptions and expectations. The inability to look at you IS his disability.

In fact, the last several months have been one long reminder of this. Most of the reminders are similar to the one above – turning away when meeting or talking to new people (novelty). His turning away will be interpreted one way or another by the recipient, perhaps as shyness, or perhaps as an altogether different disability. Depending on the situation, my tendency is to discreetly follow up with something like, Meeting new people can be hard (novelty), so he might turn away when he’s talking to you. As you become familiar, it will get easier and you will see that turning away diminish. What we don’t want to do is ask him to look, when he cannot. As he gets older, you can explain that while looking at people can be hard, the expectation (for what it is worth) is that we face people when we are talking with them. There is nothing inherently wrong with avoiding eye contact or faces or turning away. The discomfort is ours to acknowledge, consider, and deal with. It is not on the child with CVI.

Another big one is – touch! Grown ups get really uncomfortable with touching. I don’t know about your child, but my child with CVI is highly tactile. Touching reinforces his learning. Touching fills in the gaps of his visual interpretation, especially in a new environment (novelty). Looking + touching equals bigger sparks in his brain so we don’t ever want to discourage his tactile exploration (unless of course it becomes a violation of someone’s personal space). There is nothing inherently wrong with touching. From a young age we teach children “Don’t touch,” “No touching.” Go into any store and you can hear a parent saying this to a child. Touching is learning, it is about curiosity, exploring. We have worked long and hard to reach visual curiosity, the last thing I want is to discourage that curiosity in my child with CVI. We insist on “No touching” because is it not very socially acceptable. We do not say “No touch” because touching is wrong. We say “No touch” because it is a behavior that makes us uncomfortable.

There are likely many more behaviors to include here. Mouthing, smelling, or bringing an object to the lips, all fall into the sensory category. In addition to faces and touching, our other ones revolve around movement. No surprise there, since we talking about a child with CVI.

The next time you find yourself responding to the behavior of a child with CVI, take a step back for some self awareness. Is the behavior such as looking away or touching, harmful? Or does it nudge our well formed comfort zone?

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