“What does my child with CVI see?”

These days are more about what does he experience, instead of what does he see
These days are more about what does he experience, instead of what does he see

When your child is diagnosed with cortical visual impairment (CVI), you cannot help but ask, What does my child see? As a parent it was hard to even wrap my brain around the words “cortical visual impairment” – or “cortical blindness” – the first time the neurologist said them. Along with cortical blindness came other misinformation such as “color perception is usually intact” and “because it involves the brain and not the eye, there is nothing you can do.” Some people like to say that having CVI is like looking through a slice of Swiss cheese (visual fields, Roman), which does not fly because the eyes work together to create the image in your brain and those gaps get filled in. Others claim that the world appears pixellated to people who have CVI, except that the brain is not a computer. It is far easier to simulate an ocular impairment – such as the grossly distorted world of somebody with myopia. Or the blacked out central vision of a person with progressive macular degeneration. But what does a child with CVI see? Continue reading ““What does my child with CVI see?””

Waiting to play

Waiting to play
Waiting to play

On an unhurried summer day, at last, we stopped at a favorite playground. For my son who has cortical visual impairment (CVI), favorite playground means ample tree shade (photosensitive, though he won’t always admit it). It also means a good selection of slides, such as “curly slide.” Slides have been his preferred playground play for some time. Slides are downhill, his favorite. Slides are fairly easy, once you figure out how to navigate to the top, which is not always accessible or obvious to a child with CVI. Ladder can look like lots of different things.  Continue reading “Waiting to play”

“Guess Who?” game in Phase III CVI

IMG_9685This one is just for fun, because kids with CVI like to have fun. We can play a game and approach it from the perspective of cortical visual impairment (CVI). A good friend recently gave Jasper a game called “Guess Who?” My worry was that it was about recognizing facial expressions. Turns out it is more about recognizing visual details than expressions. And turns out that my son adores this game. Continue reading ““Guess Who?” game in Phase III CVI”

“Does the mailman know Santa?”

Does the mailman know Santa?
“Does the mailman know Santa?”

As parents, and especially as parents of children who have cortical visual impairment (CVI), we worry about many things. One of the things we worry about most is knowing that our child’s unique educational needs are not being met and supported. In those first years, that critical period of neurodevelopment, parents work hard to get a CVI diagnosis, a CVI Range assessment (Roman-Lantzy), and improve their child’s use of functional vision. We become fluent in the language of CVI. We color highlight, strictly adhere to complexity of array, and speak in salient features. Only to hand our child off when it comes time for transition to public school, and our well honed educational approaches fall by the wayside. Worksheets are highlighted in anything but preferred color yellow. Reading materials are simply enlarged instead of modified. The silhouettes of abstract black and white line drawings are quickly highlighted in whatever color marker was handy. We spend our time arguing with school district administrators about the need to include salient features and comparative language in the IEP (Roman). And the critical question to my son’s learning, What do you see? goes unasked, day after day, for the entire school calendar. Continue reading ““Does the mailman know Santa?””