Parenting a child with a disability challenges who we are

Parenting a child with a disability challenges who you are
Parenting a child with a disability challenges who you are

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.
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Moving mountains

New Year: Moving mountains
New Year: Moving mountains

Leaving the Pacific Northwest and Seattle, the place that was home for twenty five years – twenty five years – does not feel like failure. Instead it feels like doing the right thing for my child. It feels like exhaling for the first time in nearly eight years, since my son’s diagnosis of cortical visual impairment (CVI). Continue reading “Moving mountains”

My Beautiful Broken Brain

IMG_8206My Beautiful Broken Brain is a documentary, much of which was shot on an iPhone, about a young woman who experiences an ischemic stroke. The film describes both who she was before stroke, as told by friends and family, and who she is since.  Like so many things, My Beautiful Broken Brain is some small glimpse into the experience of my son, who also had a stroke and who lives with a brain difference, including cortical visual impairment (CVI). Continue reading “My Beautiful Broken Brain”

CVI literacy, adapting books and text

* Guest blog post by Judy Endicott

When helping my grandson, River, who is almost nine, I know it is critical to use his CVI Range score (Roman-Lantzy), late Phase II, and information about his CVI characteristics as my guide to modifying his literacy materials. I always remind myself that what I can see and understand is different from what River “sees” and understands. Continue reading “CVI literacy, adapting books and text”