“Mommy, I wish people knew I have CVI”

Heading into middle school, nearing the end of summer, my son says this more and more. “Mommy, I wish people knew I have CVI.”

He says it at all times across the day, in all kinds of places and situations. At our favorite cafe when the barista does not pick up on the fact that my son does not recognize him from only a few days earlier. “Mommy, I wish people knew I have CVI.”

While walking down the street, or walking anywhere, unable to look at the other pedestrians coming toward him, read their body language, and make predictions about where they are walking, and where he should walk to avoid collision. “Mommy, I wish people knew I have CVI.”

Shopping at Trader Joe’s, his favorite store, when an older, male customer gets offended that my son has not seen him over there in his left visual field, where he does not see. That encounter summoned the mama bear, on an otherwise lovely Saturday afternoon, toward a grown man who should have had enough grace to know better than to respond that way to a child.

“Mommy, I wish people knew I have CVI.” Walking in school hallways, crowded airports, or even hiking, he naturally drifts over to the left. Because when you cannot see to your left, where do you walk? On the left side – so you can see to the right. Only thing is, in our part of the world, we walk, drive, run, hike on the right, which means he does not see all the people, cars etc. coming toward him to the left.

“Mommy, I wish people knew I have CVI,” especially at street crossings, believe me, I wish people knew you have CVI.

Depending on your camp, CVI means cortical/cerebral visual impairment. And there’s a camp for you if you don’t like the forward slash too. CVI just means brain based visual impairment, a problem with visual recognition or interpretation, rather than a problem with visual acuity. Visual impairment due to a different brain, often from injury or illness, instead of due to a problem with the eyes.

Why now? Why is he saying it now? Like other milestones, it comes from a leap in his own awareness. Headlong into middle school, plenty of changes on the horizon, including this expanding awareness, again. The transition to being a big kid; big enough for this newfound awareness, but still young enough to address it, “mommy.” His growing independence and strong willedness are so imperfectly balanced with his CVI. It makes for a precarious road ahead.

“Mommy, I wish people knew I have CVI.” I wish people were familiar with “CVI” the way that they are with “ASD.” I wish they had at least heard of it and had some idea about what that means. I wish peers at school knew you have CVI. I wish children at the playground knew you have CVI. I wish kids at the beach knew you have CVI.

“Mommy, I wish people knew I have CVI.” There are ways to let others know. When you use your cane, it will tell people you have a vision disability, if not CVI. Half of the reason for using the cane is to let other people know. And then there is this convenient t-shirt mommy made to let people know about CVI. A few of these t-shirts are hanging in your closet. Other than that, you have to tell people in your own words.

“I wish people knew I have CVI.” Nobody wishes this more than a parent. You want the world to see your child, you want the world to see your child with CVI. I wish people knew he has CVI.