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”

“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 Along with the outdated term cortical blindness came other misinformation such as  “because it involves the brain and not the eye, there is nothing you can do.”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?””

Speaking of CVI, behavior and sensory regulation

Speaking of CVI, behavior and sensory regulation
Speaking of CVI, behavior and sensory regulation

Below is a conversation around the topic of behaviors, coping mechanisms, and sensory regulation. This was an exchange with our occupational therapist (OT) that helped deepen my understanding of my son, who has cortical visual impairment (CVI). Other parents might find this conversation useful too. Our kids with CVI have inherent sensory processing differences, and as a parent, it can be difficult to discriminate the CVI from the sensory processing. Continue reading “Speaking of CVI, behavior and sensory regulation”