Last day of school

E614090D-8F7F-445E-B5BA-801CA983D218The last day of school, at last. The last day of a long year, a transition year. New school, new teachers, new students, new environment, new team mostly new to the disability of cortical visual impairment (CVI). The last weeks were about pushing through, the final sprint. New assessments and therapy appointments were put on hold. Sensory outings and activities with animals and swimming were instead written in. Today is the last Friday of second grade. Today is the last art class. Today is the last pizza day. The countdown began. Continue reading “Last day of school”

CVI early bird

EF8A311F-C4DB-4762-9326-9B9F79BA7807“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”

At the playground

At the playground
At the playground

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”

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”