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”

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”