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”
It is hard to be the constant bearer of hard things. Hard to tell him about yet another appointment. Hard to tell him about another assessment. Hard to tell him about a new diagnosis. Hard to tell him about, perhaps, another intervention. Hard to tell him it’s an early pick up day, because a change in routine is hard. You do not look for more things, but you follow up. You do all you can now, in the hope of making life easier for him down the road. Nobody said parenting a child with cortical visual impairment (CVI) is easy. Nobody said it today. Continue reading “Hard things”
We don’t always talk about it but the truth is that parenting a child with a disability challenges who we are. It challenges us as the parents that we would like to be, the parents that we planned to be. In so many ways, parenting a child with a disability challenges our very nature, whoever we have come to be.
Continue reading “Parenting a child with a disability challenges who we are”