It’s not you, CVI, it’s me.

Listening to music
Listening to music

As my son’s OT session wrapped up, the therapist began talking to him, summarizing what they worked on, reminding him of his homework. “Next week, you’re going to make a ham sandwich with mayonnaise…” As soon as she started talking, my son turned and looked away, down toward the floor. Noticing this, the therapist stopped mid sentence and called his name. In her mind, his looking away meant, He’s not paying attention, he’s not interested, he’s not listening to me. It was easy to see how she had misinterpreted his turning away as a loss of attention and interest. For my son who has cortical visual impairment (CVI), this kind of thing happens on a daily basis. Continue reading “It’s not you, CVI, it’s me.”

Seeing CVI at school

Seeing CVI at school
Seeing CVI at school

Yesterday was a Monday, from start to finish. You know everything is going to be  extra challenging when you drop off your child with cortical visual impairment (CVI) at school and learn that his paraprofessional is out that day. We all have our emergencies, and it was her turn. Children with CVI rely on predictability and routine, especially when it comes to their people. A day of multiple transitions is not an easy prospect. It turned out that the unexpected day provided an unexpected opportunity for his teacher to see my son’s CVI. Continue reading “Seeing CVI at school”

Trick or treating with CVI

Trick or treating with CVI
Trick or treating with CVI

“Mommy, I can’t wear my glasses trick or treating because my mask goes over my face.” Until then it had not occurred to me that his head to toe Batman costume meant that friends would not likely recognize him at the first trick or treat in our new town.  The more strict school security meant no access to classrooms, no access to kids and parents at his new school. The hope was that Halloween would mean bumping into some new school friends, meeting families. Having a child with cortical visual impairment (CVI) who cannot recognize faces, makes it extra hard to recognize friends on Halloween. Continue reading “Trick or treating with CVI”

“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””

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”