As parents of children who have CVI, every day we experience their difficulty with the visual complexity of the human face (complexity, distance, latency, movement; Roman). Our kids struggle to look at our faces, to make eye contact with us, to read our facial expressions. They struggle to visually recognize us as their parents. Cortical visual impairment means they miss facial expressions such as boredom, confusion, frustration, sadness, worry. CVI means they also miss seeing the happiness, joy, love and pride that it is written on a parent’s face.
What follows is the story of Emma, who learned to smile with her mom, Lynn.
Emma was diagnosed with cortical visual impairment (CVI) at four and half years old. In 2005, there was even less awareness around CVI. There were no online resources and websites, there was no CVI Range, no CVI book by Christine Roman-Lantzy that has become essential reading for CVI parents. There were no approaches for assessing vision, improving vision, and planning interventions for children with cortical visual impairment.
It can be hard – and heartbreaking – to know that your child cannot see you. And, for our kids with CVI, it is a double-edged sword because they can learn to “see” things, yet, even at their highest level of functional vision, still may not know a parent’s face. As a Mom, or Dad, it can just break your heart. We hear it as we talk with other families who have children with CVI and each time, a little part of my heart breaks for them… and us too as we live it.
In learning more fully about CVI and the visual and behavioral characteristics, we accidentally hit on something which has brought our family little moments of joy as our daughter begins to actually see us. Our daughter Emma is an awesome 15-year-old with multiple impairments. This past September she was assessed by Dr. Christine Roman-Lantzy with a score of 5+ on the CVI Range, or Phase II CVI.
Completely by chance, we started doing “smiling” for lack of a better term. One day Emma and I were sitting together, silently, in our oversized snuggle chair when she stopped to look at me. So, I just sat there with her and smiled. And Emma kept looking. As it was happening, I thought of the characteristic of complexity and of the human face. How facial expressions and the movement of speaking makes a face more complex and harder for Emma and others with CVI to see a face. So, we stayed there… for minutes without saying anything, just smiling at her. Emma would look at me, look away, come back and look, off and on for those minutes.
This progressed over months to her reaching out and touching my lips. Emma would intensely look at my lips, then look at my eyes, back and forth. All the while, not saying anything to her and maintaining a smile. Doing this feels pretty strange but also amazing to have her really look at me, her mom, for the first time. She progressed to seeing my teeth and reaching out to touch them too. It was crazy and awesome to know that she saw the detail of my teeth.
Since then, Emma has developed a smile of her own. She will smile when she looks at me. She has begun to laugh more in appropriate contexts. My husband started “smiling” with her too. After a few times, she reached out, gently touching his cheek for the first time instead of mashing her hand against his face to feel his scruffiness in the morning. She has even given a few “lip” kisses since.
It has been an added bonus that people around us have commented that Emma is more engaged and aware now. She will look briefly at people, some whom she knows, giving them a longer glance and a smile. My guess is that Emma is figuring out the salient features of a face.
By a chance moment of quiet stillness between us, we now get to experience our daughter, not always, but in those moments – seeing us. It is no small statement to say that those shared moments are such an incredible gift from her to us. Truly amazing, just like Emma!
Names and photo are used with parent permission.