This time of year it is easy to find online lists like Gifts for Children with CVI or Sensory Gifts Your Child Will Love. In reality, these lists are hit or miss. Some sensory kids will like them, others will not. Just like all children, our kids with CVI are individuals, with their own preferences. Often their preferences make no sense with regard to CVI: the gift that makes too much noise, the gift with too many colors, the gift that’s too flashy. This year the holiday isn’t so much about what to put under the tree for my son with CVI, but what to put in his stocking? Continue reading “All I want for Xmas”
Category: sensory processing
Some days the hardest part of your child’s cortical visual impairment (CVI) is not trying to make sense of his vision, but trying to make sense of your sensory kiddo. At least this is how it is whenever it comes to dealing with boo boos or injury, illness, sickness or trauma. Continue reading “CVI First aid”
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”
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 Along with the outdated term cortical blindness came other misinformation such as “because it involves the brain and not the eye, there is nothing you can do.”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, 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 your 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?””
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”
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