“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””

“Intervention must be driven by intention, not by materials”

* Guest blog post by Judy Endicott

“Intervention must be driven by intention, not by materials.” – Christine Roman, 2018

"Intervention must be driven by intention"
“Intervention must be driven by intention”

Think about your own adult reading behaviors. Think about the range of choices of materials you have to choose from. Sometimes you pick materials based on length, sometimes on size of text, amount of pictures, subject and a range of other factors. You pick and choose, driven by goals and tempered by your energy and motivation.

So what about our CVI readers? How do we help children with cortical visual impairment (CVI) develop literacy skills? What about our kids in classrooms where the reading curriculum is not accessible to them without appropriate accommodations based on their needs (CVI Range, Roman)? Most of the school material available for their interventions is not appropriate without modification.

What does a parent, teacher, therapist do?

We search for what is motivating to our CVI reader and figure out how to present letters and text and images based on the child’s specifics determined by the CVI Range (Roman).

We customize our approaches and interventions to match the needs of our CVI reader so we can get our reader to develop and use visual skills.

Make no mistake. This isn’t quick, easy, or a task with an end point.

But by learning as much as we can about CVI, sharing ideas on literacy with each other, and arming ourselves with knowledge of the child’s use of functional vision (CVI Range score, Roman), we can make our literacy materials match our student’s needs.

Pictures, explanations, and samples coming soon in subsequent blog posts.

*Guest blog post by former educator, Judy Endicott. Judy is a reading specialist who taught in regular and special education classrooms, and worked as a reading specialist at the elementary level. She is also a Level 1 certified Wilson Reading Program teacher. Judy is the grandparent of River, who was diagnosed with cortical visual impairment (CVI) at 11 months old.

In the bathroom with my son who has CVI

In the bathroom with my son who has CVI
In the bathroom with my son who has CVI

When you are raising a child who has cortical visual impairment (CVI) – words matter. Until a few years ago, using a public restroom with my son was “no big deal.” Then one day we were waiting to use the womens’ bathroom. My son has a disability and, like other moms with young kids, we often use the disabled or “big” stall. This time the “big” stall was taken so we chose a “regular” one and that is when I made a critical mistake that haunts me to this day and said – “Let’s SQUEEZE in!” as we tried to make our way through the narrow metal door. It was the wrong choice of words, “NOOOOOOOOOOOOOO!!!!! NO SQUEEZE IN!!!” Jasper screamed, covering his ears, in a sudden state of pure panic, his body rigid and shaky. Not only did I need to use the bathroom myself but now had to calm my son over some kind of terror that I could not even see, let alone know how to fix. Continue reading “In the bathroom with my son who has CVI”

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”