Hard things

56949203_1274585616029042_2413379197780099072_oIt is hard to be the constant bearer of hard things. Hard to tell him about yet another appointment. Hard to tell him about another assessment. Hard to tell him about a new diagnosis. Hard to tell him about, perhaps, another intervention. Hard to tell him it’s an early pick up day, because a change in routine is hard. You do not look for more things, but you follow up. You do all you can now, in the hope of making life easier for him down the road. Nobody said parenting a child with cortical visual impairment (CVI) is easy. Nobody said it today. Continue reading “Hard things”

I’d know you anywhere

IMG_4722“Mommy, if you can’t find me, look for my orange shirt!” When we go running.

“I knew it was you because of your blue bag..” At the grocery store.

It is no coincidence that most of our things are brightly colored: shirts, jackets, bags, hat, bike…the car. Wherever we go we talk about how to find familiar people and how wearing a bright solid color sometimes helps my son who has cortical visual impairment (CVI), recognize or at least find me, his mom. Continue reading “I’d know you anywhere”

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.
Continue reading “Parenting a child with a disability challenges who we are”

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”