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”

Can’t we all relate to sensory complexity?

Guest post by Peggy Palmer, TVI*

Can’t we all relate to sensory complexity?
Can’t we all relate to sensory complexity?

Too often, we “typically” sighted folks tend to believe that children with Cortical Visual Impairment (CVI) are very different from us. We learn the Ten Characteristics (Roman)–hopefully–and work our way through trying to understand our student or our child with CVI. Continue reading “Can’t we all relate to sensory complexity?”

In the bathroom with my son who has CVI

In the bathroom with my son who has CVI
In the bathroom with my son who has CVI

When you are raising a child who has cortical visual impairment (CVI) – words matter. Until a few years ago, using a public restroom with my son was “no big deal.” Then one day we were waiting to use the womens’ bathroom. My son has a disability and, like other moms with young kids, we often use the disabled or “big” stall. This time the “big” stall was taken so we chose a “regular” one and that is when I made a critical mistake that haunts me to this day and said – “Let’s SQUEEZE in!” as we tried to make our way through the narrow metal door. It was the wrong choice of words, “NOOOOOOOOOOOOOO!!!!! NO SQUEEZE IN!!!” Jasper screamed, covering his ears, in a sudden state of pure panic, his body rigid and shaky. Not only did I need to use the bathroom myself but now had to calm my son over some kind of terror that I could not even see, let alone know how to fix. Continue reading “In the bathroom with my son who has CVI”