“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?””

“Literacy begins when they look”

preferred color, light, preferred visual field
preferred color yellow, light, preferred visual field

“Literacy begins when they look.” These were the words with which Christine Roman-Lantzy began her pre-conference session last fall at Northeast AER in Vermont. These words are important because parents of children who have cortical visual impairment (CVI) need to know that when we talk about literacy, we are not only talking about kids who are in Phase III CVI (Roman). When we talk about CVI literacy, we are talking about all kids who have cortical visual impairment. Continue reading ““Literacy begins when they look””

Things people say to CVI parents

Things people say_CVIThings people say to CVI parents
Things people say to CVI parents

As parents we hear all kinds of inappropriate comments about our children who have cortical visual impairment (CVI). Some of the most common ones reported by parents:

“Vision is the least of her problems.”

“You wouldn’t know there is anything wrong with him.”

“She looks like she can see.”

“What does he SEE??” (a personal favorite)

One of our all time best comments came from a preschool special education teacher, in response to my advocating for materials to be modified for my son with CVI, to give him visual access: “We are preparing these kids for kindergarten, we need all the materials to look the same.” Neither the teacher of the visually impaired (TVI) or the orientation and mobility specialist (O&M) said a word.

Then there is the multitude of comments around Autism. People, ordinary everyday people who “diagnose” your child with Autism. Parents of kids with Autism who “understand” your experience with your child who has CVI. This is in addition to providers who regularly offer you an Autism assessment, just in case you want to access “more services.” As if feeding therapy, neurology, occupational therapy, ophthalmology, physical therapy, speech language services and everything else you do for your child was not enough. Most all providers have heard of Autism and can tell you something about it. Those same providers then get tripped up on the words, cortical visual impairment.

Parents, are these comments familiar?