“Where ARE you?”

8A3B296B-D93C-4C9B-AC4C-45109525CE25What to wear to go running at the track with my son who has cortical visual impairment (CVI)? With school out, the track would be empty so I am less thoughtful about the question of what to wear. Grey shorts and a grey tank top, my favorite top for keeping cool on a warm, humid day. We were good to go.

CVI impacts my son’s motor planning. That means when he is riding a bike, he asks, Mommy, where should I ride? We seek out places that have paths, trails, some kind of visual guide. One of our favorite playgrounds, designed with kids with Autism in mind, has a blue winding path that circumnavigates the play space. It was perfect for my son with CVI, who could simply follow the path.

Running on a track is predictable. No planning, just go. When you combine lack of motor planning with lower visual field deficits, running fast is hard too. On the track I wanted him to have a different experience. Run, run, run just as fast as you can (Stinky Cheese Man). Luckily, I finished first and waited for him. As he made the final turn before the last straightaway, I called out, FINAL SPRINTRUN AS FAST AS YOU CAN! We had practiced this together on previous visits.

Until then he was doing just fine. Calling out reminded him that he had visually lost track of mommy, standing at our start line next to the shiny silver water bottle that we leave in the same spot each time. His auditory processing makes it difficult for him to locate the sound of my voice, auditorily.

“Where are you, mommy? Where ARE YOU???”

Panic weaves through his voice. Standing there in a grey running outfit against the backdrop of clouds and gravel track and dried grass was not helpful for him. He had lost me.

Typically when we go to busy, crowded, loud, novel places (novelty, sensory complexity), bright color is a salient feature of my outfit. An intense pink tank top for a visit to the playground. Preferred color yellow hat for after school pick up. A red jacket for adaptive ski lessons. One winter, when he was much younger, we splurged on matching chartreuse down jackets (preferred color yellow).

When we walk away from our child with CVI, we disappear. Walking away does not mean twenty five or thirty feet. Walking away can mean as little as a few feet. He turns and spins in the store, and mommy vanishes. That bright color gives him something to look for, it anchors him (CVI 10 characteristics, Roman).

It is common for children with CVI to have a hard time looking at faces (due to the complexity of the human face), to recognize faces and interpret facial expressions (Roman). Children with CVI may compensate by learning to recognize familiar people using other details, maybe visual, maybe not. This might mean he recognizes a familiar person by hair or clothing (visual), or by voice (auditory). Many times, the expression of visual recognition for my son in Phase III CVI is not present until he hears a person’s voice. When facial recognition is not an option, color can help him see me and ease his anxiety.

That is when we are out and about. What does that look like at home?

Usually it is easy to visually find mommy at home, in the familiar kitchen or the low complexity setting of the living room. Even so, at home I have a habit of letting him know where I am – Mommy’s going downstairs to get laundry, then I’ll be back up. This is especially important for him following a move, a novel environment – especially if  his world has been turned upside down by moving across the country (novelty, novelty, novetly).

Early on, there is a lot of, Mommy is going to check the mail or Mommy will be in the living room sitting down for two minutes. Doing this regularly, being predictable for him, helps decrease his Where ARE YOU anxiety. Being predictable for our kids with CVI also builds trust. “The opposite of anxiety is not calm, but trust” (Uniquely Human, Prizant). The more that I do this, the less he needs it.

Getting ready to go to the track this morning, this time sporting a yellow Nike tank top. As we get in the car, he says, “If we’re running and I get lost, I could look for your  yellow top.”

If I get lost.

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