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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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Change is hard

IMG_2204A new school year. Substitute teachers. The new student in class. An unexpected fire drill and, God forbid, the lockdown drill. A different para today. Meeting a new provider for a new therapy appointment. For children with cortical visual impairment (CVI), a typical day is a long day of constant change. We are all familiar with Heraclitus’ quote: “Change is the only constant in life.” For a child with CVI, when we talk about change, we are talking about novelty (Roman). Continue reading “Change is hard”

CVI Iceberg

CVI icebergThe first Start Seeing CVI t-shirt was created with the idea that when an educator looks at a child with cortical visual impairment, they would see the CVI, the ten characteristics (Roman). It is intended as a reminder: “I need to talk to him, I’d better take him to a quiet, less noisy spot” or “I’m showing her this object, I need to remember to hold it over to her left” or “I’m color highlighting this photograph against a plain background, I’ll be sure to use his preferred color yellow.” Each time, you are reminded of ten things to be mindful of when working with that child. Continue reading “CVI Iceberg”

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”