Advocacy and awareness of cortical visual impairment (CVI), the leading cause of visual impairment in children
“Hi, how long is open swim today?”
“Until three… pool’s empty right now.”
“EMPTY??” We’ll be right. There.
It was Memorial Day and it made sense that most people were out of town or out at the beach or out at a barbecue instead of at the local Y. The prospect of having an entire, not quite Olympic sized pool all to ourselves, me and my son who has cortical visual impairment (CVI), was almost too good to be true. Continue reading “CVI early bird”
If nothing else, the end of the school year is about reflection, right? This year it is also about celebrating a better school setting, and the end of another grade, by way of a playground gathering for all second graders. Along with it came a glimpse into the playground experience for my son who has cortical visual impairment (CVI). Continue reading “At the playground”
“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”
When 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”
“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”
