Let’s change the way we talk about kids with CVI

Let's change the way we talk about kids with CVI
Let’s change the way we talk about kids with CVI

“He’s just so…UNIQUE.”

“I’m not sure we would have the expertise needed to assess her.”

“He almost sounds like… a case study.”

“He sounds too complex to be evaluated.”

Some days our kids with cortical visual impairment (CVI) really put the special in the term “special needs.” Lately, in yet another quest to find a provider to conduct an appropriate assessment, it is back to this all too familiar language when it comes to talking about our children with CVI. Continue reading “Let’s change the way we talk about kids with CVI”

Back to school in April

09189E40-F539-48C2-B66E-874786D3C200“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”

April is CVI Literacy Awareness Month

CVI Literacy_2019This 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”

At the store with my child who has CVI

At the store with my child who has CVI
At the store with my child who has CVI

“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”

Quote from a CVI parent

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”