Going to birthday parties is a childhood rite of passage. When you have a kid with cortical visual impairment (CVI), invitations bring a mix of anticipation and dread. Anticipation because you want your child to be included in the first place – just like all the other kids. And dread because celebrations, events, gatherings, parties are a delicate balance for kids with CVI. Birthday parties can involve some of the most challenging characteristics of cortical visual impairment – a party in a new environment (novelty), lots of kids (complexity, difficulty with faces, complexity of array), and energetic little bodies (latency, movement). Add the sounds of a bunch of excited kids and you have one Complex sensory environment. (Roman-Lantzy) Birthdays are a perfect storm for a CVI meltdown. Continue reading “Birthday party”
Today we begin a long overdue conversation about improving educational services for students who have cortical visual impairment (CVI). Please join us this evening for a national teleconference sponsored by American Foundation for the Blind. We especially need CVI parents to participate and make your voices heard. Details and link below.
Wednesday Evening, March 14, 2018
8:30pm Eastern, 5:30pm Pacific
To join the call:
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?
If you are the parent or caregiver of a child with cortical visual impairment (CVI), please fill out this brief, confidential survey. The survey is in collaboration with a study group to learn about parent and caregiver perceptions of the information, support, and education for children with CVI. Findings will be published in an upcoming journal. Your response and feedback is critically needed.
If you work with children who have CVI, please share the survey with your families.
In spring 2012 I was trying to predict when Jasper might walk. He was an expert crawler and speed crawler – also called victory crawl, we learned at therapy. He could pull to stand and cruise somewhat but walking was unpredictable. Jasper would turn eighteen months old in August, and that was about my best estimate. With summer on the horizon, I dreamt of walking on the beach with Jasper, holding his small hand in mine, our footsteps making trails together in the wet sand.