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”

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”

September is CVI Awareness Month

September is CVI Awareness Month
September is CVI Awareness Month

September is the first official CVI Awareness Month. Cortical visual impairment (CVI) has been the leading cause of visual impairment in children in the U.S. since the 1990s. CVI is the public health crisis that you haven’t heard of. For parents of children with cortical visual impairment, every day – every medical appointment, every school meeting, every therapy appointment, every inquiry from a well meaning, random stranger – is about CVI Awareness. Continue reading “September is CVI Awareness Month”

Call to action: assault on children with CVI

CVI Parents, does your child benefit from the use of the CVI Range assessment? Does your child’s team rely on the CVI Range in an early intervention or educational setting? Does the CVI Range help the adults in your child’s life understand his/her vision better? Does your child require the CVI Range in order to have visual access to the curriculum? Does your child with CVI require the CVI Range in order to receive a Free and Appropriate Public Education (FAPE)? Mine does. Continue reading “Call to action: assault on children with CVI”