Blog

A horse and hemianopia

369A1C63-F808-4A4B-97B2-B0C5F7005F6BYou might be looking at this photo of a horse and thinking, What the heck does a horse have to do with CVI? With my child’s hemianopia? Recently a horse drawn hayride, pulled by these horses, provided a perfect example of what happens with hemianopia. Continue reading “A horse and hemianopia”

CVI in the hallways

CVI in the hallways
CVI in the hallways

Back to school for students with cortical visual impairment (CVI) means right back to navigating what can be brutal school hallways, sometimes even when devoid of students. In preparation for this year, I recently shared the blog post Fighting an Unwinnable Battle by Nicola McDowell, describing her emotional state by the time she arrives at class. Learning about her experience as a student and adult with cerebral visual impairment is so relatable when it comes to my child with CVI. Reading her blog helps me understand his experience in a way that few other resources can. Already this school year is a  reminder of the difficulty of navigating hallways for a student with CVI. Continue reading “CVI in the hallways”

It is time to catch up with children who have CVI

SeeingCVISeptember is CVI Awareness month. CVI is a brain based visual impairment, that means it’s a problem with the brain, not the eyes. CVI is about visual interpretation and visual recognition, it is not about acuity (Mazel). People with CVI see what we see, but they cannot interpret it (Roman). CVI is the leading cause of visual impairment in children. And it has been since the 1990s. Continue reading “It is time to catch up with children who have CVI”

The yellow towel

CA339CDC-C0F6-4126-8114-5A4518D2C023Back to school this year resembles last year. Last year’s cross country move meant months-long preparation and purging. This year’s move came quick, with little notice in the midst of an already busy summer. Last year was a new town, state, side of the country, new school, peers, teachers, all new people. This year it’s the same school with a few new peers, new teacher, new classroom. The only constant in life is change. As usual with change comes reflection. Instead of back to school or change or growing up or growing older, this reflection is about a yellow towel. Continue reading “The yellow towel”

Finding Nemo

IMG_2554It should surprise no one that with movies, my son with cortical visual impairment (CVI) loves to watch the same familiar titles over and over (Novelty). Harry Potter but only Sorcerer’s Stone and Chamber of Secrets, on repeat. The original Toy StoryFinding Nemo was one of the first movies we watched intentionally, by now we have seen it countless times. Marlin explaining his son Nemo on the Big Screen – “He was born with a short fin” is a giant mirror. Every time, it is a reflection, and I hear myself describing my son’s disability. More importantly, it is a reflection on the language I use when talking to Jasper.
Continue reading “Finding Nemo”