Faces are hard

When you live with somebody who has cortical/cerebral visual impairment, CVI, you think you know. Especially when you’ve known them from birth, when you’ve devoted your life to caring and learning about that person. Sounds are hard, I get it. We’re going someplace new, we’ll talk a lot about it, compare it to a familiar place, prelearn a map whenever possible, I get it. He looks at faces but faces are hard. He cannot recognize faces, he cannot recognize me. By now I’ve seen him not recognize familiar friends, people, teachers, many many times. You know this person, you know CVI, and its impact still catches you off guard, even after ten years.

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Back to birthday parties

With the return to in person school following a year of remote learning, the birthday party invitation came early. The real and true measure of any and all social skills goals in the IEP should be, “By June, having received all appropriate supports in place all year long, the student with CVI will be invited to X number of birthday parties.” Believe me, there is nothing so gut wrenching as attempting to explain to your child why he was not invited to the party. Here we are in November, at the first birthday party invite, for my son with CVI. Continue reading “Back to birthday parties”

“Coronaviress”

BB60D3C5-264B-46F7-B273-F1E366C80A4F“Everything is cancelled.”

All of his questions have the same response. I don’t know – everything is cancelled. We can’t do that right noweverything is cancelled. We can’t go there right noweverything is cancelled. When you have a sensory kid with CVI who exists on certainty and routine and predictability and structure, providing normalcy and certainty right now feels impossible. In this time of coronavirus, his CVI, his sensory experience, his worries, are not cancelled. Continue reading ““Coronaviress””