‘So hard, this CVI’

The face your child makes when he cannot recognize you. I am there, maybe twenty feet in front of him, calling his name. The balmy therapy pool is not busy but the indoor acoustics of water and splashing and concrete interfere with the sensory processing necessary for locating mommy by voice. Cortical visual impairment interferes with sorting out and distinguishing the visual information of mommy, and the background grid of cubbies stuffed with tote bags, shoes and brightly colored towels. Standing almost directly in front of him, my son moves his head to the left, shifting me into his right, or preferred visual field,  unsure of whether he hears his mother’s voice, and unsure where to find me in that space.

If you have a child with cortical visual impairment (CVI), you have seen the look. At school, therapy appointments, any time you are away from home. That look of uncertainty,  is that mom. Navigating early intervention services with a young child with a disability means answering lots of questions, usually many times over. Does he look at your face? Does he make eye contact with you? Does he recognize you?  You feel your heart sink, you want to answer, Sometimes..maybe, before admitting that your child cannot recognize his mother’s face, No. The answer is noted and jotted down, recorded on paper, before moving along to the next question. There is no acknowledgement, no pause. No one stops to say, That must be hard.

Newborn babies have a short list of things they can do. One of them is staring at mom. Their natural nearsightedness allows for just this and infants soon learn to recognize mom. Nearly everybody will comment how a baby stares at its mother. For a baby who has cortical visual impairment, this process is disrupted.

Recently a CVI mom friend recounted the following experience. This was an encounter with her daughter upon returning home from a four day work trip. “I saw my daughter this morning when she woke up and she did not recognize me at first. So hard, this CVI.” The little girl is in late Phase II CVI (Roman-Lantzy). When she woke up, she would have seen her mother in the setting of morning, in the familiar environment of home, in her bedroom, likely in her bed or crib. Amidst this rich context, still, recognizing mom was hard.

When our children cannot recognize us we are seeing the CVI characteristic of complexity at work (Roman). Human faces are highly visually complex. Often a child with CVI cannot even look at a face. Our fleeting, ever changing expressions work against another CVI characteristic, latency. Latency means children with CVI require more time to respond to a visual target – longer than the instantaneous nature of facial expressions allow – to visually attend, let alone to process and interpret. In Phase III CVI and six years old, my son has learned to compensate and can sometimes recognize familiar people by features other than faces, including hairstyle or color, clothing, body language, scent, and especially voice (Roman). During the birth to three years, we often biked to Jasper’s infant-toddler class.  For me that meant cycling attire such as spandex, and hair pulled into ponytails. This bike uniform became recognizable and reliable enough that my son could pick me out from the other moms when we returned at the end of class.

Over these past six years certain strategies have helped my son recognize mom. Especially compared to a child with normal vision, he has decreased visual curiosity and sticks close. Even being five to ten feet away from mom can be disorienting for him. When going out, whether to a store or a crowded summer festival, we talk beforehand, Mommy’s wearing a bright yellow t-shirt today. Possibly because of the bicycle years, he has a fondness for ponytails, and some days is insistent that mommy wear a ponytail, probably for recognition. One winter, we opted for matching chartreuse down jackets. Even our bright matching colors were often not enough to visually anchor him to mom.

School teams will sometimes note how good Jasper is at recognizing people. But too often he struggles to visually identify a familiar schoolmate, and there is that uncertain look, followed by social awkwardness. It is still hard to see the face he makes when he cannot see you.

*      *      *      *

At the end of the school day I stand alongside the other parents, waiting for kindergarten to let out, having claimed the spot in front of the door, same place each time. Once the bell rings, the brick hallway fills with noisy bustling children. His typical classmates shuffle out in a line, their eyes scan and quickly, easily find mom or dad. As my son approaches the doorway and looks around, I say his name and lean forward. Because at the end of a long school day, he should not have to work to find mommy.