“Wait – what??” you might be thinking. It’s only April. It’s only just now turning to spring. The return of warmer weather. Trees and flowers blooming, longer and brighter days ahead. School is still in session. Maybe you haven’t even had your IEP meeting for your child with cortical visual impairment (CVI). Or maybe you are still struggling through this school year, let alone ready to get ready for the next one. Or maybe every morning you wake up to, “Do I have to go to school?” “Can I stay home, just today??” (A thousand times, no.) It might still be April, but it is not too early to start thinking about back to school. Continue reading “Back to school in April”
This April is our second annual CVI Literacy Awareness Month. When it comes to “visual impairment” most people think of two things: the eye, and braille. Cortical visual impairment (CVI) is different on both fronts. CVI is a brain based condition, not an eye condition. And most children and people with CVI are not braille learners. The critical difference with respect to both issues is that with CVI, vision can improve. Children with CVI may not be braille learners, but their literacy needs are just as unique. Continue reading “April is CVI Literacy Awareness Month”
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.”
“You guys sure go to the store a lot!” Last week was all about parent teacher conferences, and both the classroom teacher and resource room teacher made the same comment. It is true that my son enjoys going to stores, especially food shopping. It is also true that we do many other things, like hikes, walks, the beach, riding bikes – in addition to a never ending schedule of medical and therapy appointments. But our outside excursions are not the activities that make their way back to the classroom. My suspicion is that his focus on stores and places has more to do with getting to know a novel community, and the lay of the land, along with the social experience of it all. That both teachers commented made me think of all the things you can do at the store, when your child has cortical visual impairment (CVI).
Continue reading “At the store with my child who has CVI”
On the Start Seeing CVI Facebook page you can find many graphics. But this one is too good and too important not to share via this blog. The quote comes from Rachel Bennett, a CVI mom. You may have seen Rachel’s blog posts on Paths to Literacy. She perfectly captures the reality for parents of children with cortical visual impairment (CVI). Continue reading “Quote from a CVI parent”