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”

How my sensory experience helps me know my son with CVI

1230886C-E6EC-4245-B6F4-0FBEF6BD7D99When you have a migraine for three days, it is hard not to think of the sensory experience of your child who has cortical visual impairment (CVI). No, having a  migraine is not the same as living with the neurodiverse diagnosis of CVI. But as the migraine persists, it is hard not to compare it with his sensory experience. Could it be that my son’s sensory experience has made me more aware of the sensory experience of migraine? Continue reading “How my sensory experience helps me know my son 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”

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.”