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.”

“Uniquely Human”

23492643If you are the parent of a child with cortical visual impairment (CVI), why would you read a book about children with autism? Children with CVI and children with autism  are different, their brains are different, but they share some behaviors. So much so that, when educators or therapists or providers see those behaviors in your child, the tendency is to see autism, and not to see CVI. Those shared behaviors were the motivation for reading Uniquely Human: A Different Way of Seeing Autism. Continue reading ““Uniquely Human””

CVI modifications, it’s the little things.

CVI modifications, it's the little things
CVI modifications, it’s the little things

On the brink of November, for a child with cortical visual impairment (CVI), it is still the beginning of the school year. Each school year is different for all kids, but for kids with CVI, each year may as well be a whole new school (especially when it really is a new school, new school district, new neighborhood, new city, new state, a whole new world). The CVI characteristic of novelty (Roman-Lantzy) has an impact on our kids and “new” lasts longer. Newness lingers for them, much longer than it ever would for us. Continue reading “CVI modifications, it’s the little things.”

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”