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?