Seeing CVI at school

Seeing CVI at school
Seeing CVI at school

Yesterday was a Monday, from start to finish. You know everything is going to be  extra challenging when you drop off your child with cortical visual impairment (CVI) at school and learn that his paraprofessional is out that day. We all have our emergencies, and it was her turn. Children with CVI rely on predictability and routine, especially when it comes to their people. A day of multiple transitions is not an easy prospect. It turned out that the unexpected day provided an unexpected opportunity for his teacher to see my son’s CVI.

Parents of children with CVI talk a lot about how our kids are unable to recognize us. We offer ourselves as examples to underscore difficulty with faces (Roman) when it comes to looking at a face, let alone visually recognizing someone; and the particular difficulty of recognizing the person who should be the most recognizable in your child’s life, but is not.

In her presentations on CVI and the CVI Range, CVI Teacher Ellen Mazel includes a story about this topic. She will often invite a parent for an unanticipated visit to their child’s classroom. Doing this helps her assess the impact of the CVI characteristic of complexity (Roman), difficulty with faces. By doing this, teachers can also see for themselves how hard facial recognition can be for a student with CVI.

By the end of the day, it was hard to know what to expect. School pick up would be different. Who would be with him? What had his day been like? And mostly, how would he be feeling?

At a new school, in a different state, the pick up routine is far more controlled than the casual one we left behind. As it goes, students and caregivers meet in the cafeteria. Students line up in rows, by their grade, while parents wait in a long line along the other side of the room. When students arrive, the teacher calls out the name of the student, who walks over to meet his parent. As the mom of a child with CVI, I stand there and marvel at the ease with which most kids walk in and instantly spot a family member from across the crowded room. Except for mine.

In order to make pick up more predictable for my son, I wait in the same spot, right at the front of the room, not in the long line with the other parents.

My son comes in with one of his teachers. As usual this year, most of his team is unfamiliar with CVI. That means everybody is still learning. By now they have had multiple in-services on CVI, his CVI Range, and What’s the Complexity, along with a handful of parent-team meetings. This is where it has been easy to see the value of having a teacher of students with visual impairments (TVI) who is really an expert in the field of cortical visual impairment. Even so, there is nothing like seeing to believe.

As mentioned, our kids with CVI cling to their routines. His teacher saw me right away and let the other teacher know to call my son’s name next – until he hears his name over the microphone, he won’t proceed with the end of day process. They walked over to me,  right in front. Wearing my bright yellow hat, and less than five feet from my son, he could not see me. He was looking, but he could not recognize me. Sometimes I will move slightly, or bend down to his height, or of course, speak. This time I deliberately waited a beat and was silent, so that his teacher could see Jasper not seeing his mom, who should be really familiar, right? Waited so that she could see his CVI. Long enough for his teacher to see, but not so long as to cause him distress. Because finding mommy at the end of the school day, should not be about stress.

After saying his name, he found me right away. His teacher reported on what a great day he had, filled with transitions. That Monday, he rolled with it.

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