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”

Yes, you need to understand something about CVI if you work with my child

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Yes, you need to understand something about CVI if you work with my child

Social skills play groups are hard to come by. And when your child has cortical visual impairment (CVI), it is even harder. For some reason, CVI does not easily translate when it comes to speech and communication providers. Surely there are exceptions, but that has been our experience. So, among other things, the last month has been about deciding whether a play group is a good fit. Finding the right fit has been like trying to fit a square peg in a round hole. Continue reading “Yes, you need to understand something about CVI if you work with my child”

‘This Type of Blindness Technically Isn’t an Eye Problem’, parent article on CVI

If you have not already seen it, ‘This Type of Blindness Technically Isn’t an Eye Problem’ is a wonderful article on cortical visual impairment (CVI). And it is written by a parent, Amy Whipple. It includes a good explanation of CVI, and a summary of Christine Roman-Lantzy and her life’s work on CVI. Most of us do not know where our children would be without her dedication and study of our child’s disability. Continue reading “‘This Type of Blindness Technically Isn’t an Eye Problem’, parent article on CVI”