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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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”

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.
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