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 your person with CVI. Sounds are hard, I get it. We’re going someplace new, we’ll talk about it a lot, 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, kids, teachers, people, many times over. You know this person, you know CVI, and its impact still catches you off guard, even after ten years.
Continue reading “Faces are hard”Category: cvi parents
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”
Along the way of raising a child with a disability, there are moments when life seems to somehow come full circle. That’s what happened one day while reading a favorite book to my son with CVI. Continue reading ““Dandelion””
“Everything is cancelled.”
All of his questions have the same response. I don’t know – everything is cancelled. We can’t do that right now – everything is cancelled. We can’t go there right now – everything 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””
When it is both CVI Literacy awareness month and the time of the coronavirus, you know it is going to be a brief post. What follows is a description of one approach to early literacy and books that began with the use of familiar objects (because of the CVI characteristic, novelty) as suggested by Christine Roman-Lantzy, PhD.
Continue reading “CVI first books”
Start Seeing CVI 