Speaking of CVI, behavior and sensory regulation

Speaking of CVI, behavior and sensory regulation
Speaking of CVI, behavior and sensory regulation

Below is a conversation around the topic of behaviors, coping mechanisms, and sensory regulation. This was an exchange with our occupational therapist (OT) that helped deepen my understanding of my son, who has cortical visual impairment (CVI). Other parents might find this conversation useful too. Our kids with CVI have inherent sensory processing differences, and as a parent, it can be difficult to discriminate the CVI from the sensory processing. Continue reading “Speaking of CVI, behavior and sensory regulation”

New research on aquatic therapy and the brain

New research on aquatic therapy and the brain
New research on aquatic therapy and the brain

This information on water and the brain is too good not to share. Most families of children who have cortical visual impairment (CVI) seem to report that their child “loves water.” This research, shared by our aquatic occupational therapist (OT) tells us why. The information comes from the International Conference for Evidence Based Aquatic Therapy (ICEBAT), recently held in Las Vegas, Nevada. Continue reading “New research on aquatic therapy and the brain”

“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. Continue reading ““Intervention must be driven by intention, not by materials””

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”