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?

Dr James Jan quote

#StartSeeingCVI2018
#StartSeeingCVI2018

Great quote from Dr James Jan, to whom we owe so much for his contributions on cortical visual impairment (CVI). Dr Jan’s work of studying, defining, and writing about CVI began in the 1980s. The quote illustrated here was traced back to 2001. #StartSeeingCVI2018

“Traditionally, educators for the visually impaired assisted only those whose eye conditions were associated with visual loss (reduced acuity). Now it has become necessary to offer services for those whose visual loss is due to brain damage. Thus, the definition of CVI was born.”

– Dr James E. Jan, 2001

This is the year we Start Seeing CVI

This is the year we Start Seeing CVI
This is the year we Start Seeing CVI

As the parent of a young child who has cortical visual impairment (CVI), I have explained my son’s diagnosis to countless providers. When I say providers, we are talking about early childhood educators and interventionists, neurologists, occupational therapists (OT), ophthalmologists, optometrists, orientation and mobility specialists (O&M), pediatricians, physical therapists, special educators, speech language pathologists, and especially teachers of the visually impaired (TVI). Because of the lack of awareness, education, and knowledge of CVI across the board, it has fallen to this CVI mom to educate everybody who works with my son. When you are a parent of a child with CVI, you spend every single day fighting for your child to receive appropriate services, an appropriate education, and access to the curriculum and the world. Continue reading “This is the year we Start Seeing CVI”

Return to Wonderland

Originally published November 12, 2013

Pittsburgh Zoo

In the weeks leading up to our October appointment with Christine Roman-Lantzy, I debated going. Jasper’s developmental Renaissance, which began in early summer, was still going. Global improvements in communication, speech, feeding, auditory processing, and vision. Another new mom once said to me, “My baby changes so much every day, he’s constantly learning something new!” At the time, Jasper was about a year old, and doing Ok, but the words struck me. Changes so much… every day?? I had no idea what that meant. My experience was different from that of other new moms. Continue reading “Return to Wonderland”