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””

Recognizing friends is hard

Recognizing friends is hard
Recognizing friends is hard

After a long dry spell this school year, today was birthday party number two. This one was held at our local children’s museum. It would be the opposite environment of the previous calm, low key birthday, at home, with only five boys, from last weekend. To prepare we talked about how many kids would be there, likely more than five. A few familiar kids were invited so we focused on them. We talked about the complexity and noise and unpredictability of the surrounding museum with all of its activity and sounds and visitors. The museum was not a favorite and we rarely visited, so in addition to the overarching complexity, we added novelty (Roman). For my son who has cortical visual impairment (CVI), these are some of the most difficult CVI characteristics. Continue reading “Recognizing friends is hard”

Birthday party

Birthday party
Birthday party

Going to birthday parties is a childhood rite of passage. When you have a kid with cortical visual impairment (CVI), invitations bring a mix of anticipation and dread. Anticipation because you want your child to be included in the first place – just like all the other kids. And dread because celebrations, events, gatherings, parties are a delicate balance for kids with CVI. Birthday parties can involve some of the most challenging characteristics of cortical visual impairment – a party in a new environment (novelty), lots of kids (complexity, difficulty with faces, complexity of array), and energetic little bodies (latency, movement). Add the sounds of a bunch of excited kids and you have one Complex sensory environment. (Roman-Lantzy) Birthdays are a perfect storm for a CVI meltdown. Continue reading “Birthday party”