“Brave As Can Be: A Book of Courage”

"Brave As Can Be: A Book of Courage"
“Brave As Can Be: A Book of Courage”

Children with cortical visual impairment (CVI) are inherently sensory kids. At least mine is, everywhere, all the time. Because of brain differences, sensory processing is different. In addition to vision, this means hearing, smells, taste, touch are different too. These differences are a part of nearly everything we do, every single day. And it is addressed in many ways. Continue reading ““Brave As Can Be: A Book of Courage””

Novelty is a Great Big Deal (moving with your child who has CVI)

IMG_5811Moving is hard. Yesterday was about learning what a Great Big Deal the CVI characteristic of novelty still is for my son who has cortical visual impairment (CVI). After driving across the country, itself an exercise in novelty, among many other things, our belongings arrived in a small portion of a  vast shipping container. Prior to its arrival, we talked about having our “stuff” again. For several days, we occupied our new home with limited possessions and no furniture. It was the perfect low complexity environment for a child in Phase III CVI to learn about and explore a new living space. Continue reading “Novelty is a Great Big Deal (moving with your child who has CVI)”

What do you see? How do you know?

When it comes to looking at books with my son who has cortical visual impairment (CVI), there is a specific approach. He is in Phase III CVI (Roman-Lantzy) and there are some books that we buy off the shelf, and look at unmodified. As always,  when it comes to choosing books, the goal is to feed his interest in literacy by choosing subjects that will be meaningful and motivating. Recently we picked up This is How We Do It: One Day in the Lives of Seven Kids from Around the World, by Matt Lamothe. My son is incredibly social and highly interested in people and other kids, my suspicion was that he would like the book. Since buying it several weeks ago, Jasper has read it every night at bedtime. When he reads the book to me in the dim evening light, I can tell that he has the book memorized. Continue reading “What do you see? How do you know?”

“We are going to change how our children with CVI see the world”

The fourth annual CVI Symposium was inspiring and hopeful from the outset, with the remarks of Ed Bosso, Perkins’ president: “Not only are we going to change the world, we are going to change how our children with CVI see the world.” I cannot help but add – we are going to make sure the world starts seeing our kids with cortical visual impairment (CVI), the leading cause of visual impairment in children in the US. The auditorium was filled with parents, providers, researchers and included Lotfi Merabet, Christine Roman-Lantzy, and Ellen Mazel. Continue reading ““We are going to change how our children with CVI see the world””