Children with cortical visual impairment (CVI) are inherently sensory kids. At least mine is, everywhere, all the time. Because of brain differences, sensory processing is different. In addition to vision, this means hearing, smells, taste, touch are different too. These differences are a part of nearly everything we do, every single day. And it is addressed in many ways.
An ongoing theme for us is, Everybody is different, not just Jasper. Our book choices often reflect this. So we were happy to find Brave As Can Be: A Book of Courage, by Jo Witek and Christine Roussey. It is a story about a little girl who overcomes a “mountain” of fears. At the beginning of the book, the girl tells us how she tends to close her eyes and cover her ears when she is scared. Covering ears is a common strategy for my son. The girl’s fears of dogs, thunder (loud, unexpected sounds), and teachers are all familiar. And then there is her fear of losing track of mommy.
On one page, the girl describes letting go of mommy’s hand in a busy store and “losing” mommy. “Sometimes moms get lost,” the author tells us, reassuringly. The girl goes on to describe how she bravely spots her mom through the crowd.
As soon as we finish the passage about losing mommy, Jasper asks:
“How do I know it’s mommy? When I’m looking into a crowd of people? How do I know it’s mommy??”
Faces are hard. Recognizing mommy is hard. Hearing your child say it is hard, too.
We know that looking at and recognizing faces is difficult for a child with CVI (Roman). This is the CVI characteristic of complexity at work. Recognizing faces, mommy, friends, is an almost daily exercise. Jasper is seven years old, and well into Phase III CVI (Roman). And Jasper does not recognize mommy’s face. It is why he always requests that mommy wears ponytails. Ponytails, glasses and ears, we joke, are mommy’s salient features (Roman).
Other than ponytails, glasses, ears, we talk about other ways to recognize mommy, friends, people. Hearing a voice always helps. But we focus on visual details. We can talk about a person’s outfit that day, or hair color, or hairstyle. Or, Jasper suggests, recognizing mommy by my iPhone. Hint: the iPhone cover is preferred color yellow (Roman), or lemonade.
Recognizing faces is hard, and it is real. For parents, it might be the most difficult CVI characteristic of all.
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It is so hard to navigate life with a child that annoy see faces! I have people tell me “he knows who it is, him asking who it is all the time is just a habit “ it can be lonely and frustrating as people do not understand!
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