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”
“CVI parents are the busiest parents I know,” Christine Roman says this often. Now, CVI moms are busy working on CVI advocacy. Next up is a national phone call – initiated by a CVI mom – to begin a conversation on improving education and services for our kids with cortical visual impairment (CVI), the leading cause of visual impairment in children in the US.
There is a disservice when it comes to serving students with cortical visual impairment. Our children are denied equal access to appropriate assessments, interventions and services and they deserve better. Join us to begin a conversation about CVI advocacy and improving education and services for our kids.
CVI parents, we need your voices – please join us on the evening of Wednesday, March 14, 5:30 PDT / 8:30 EDT.
Special thanks to American Foundation for the Blind (AFB) for sponsoring this national conversation. Panelists, including CVI parents, will be announced soon.
Click for details CVI Advocacy National Teleconference Call
Wednesday Evening, March 14, 2018
5:30pm Pacific / 8:30pm Eastern
To join this free call:
Thank you to CVI mom Rachel for sharing your photo and wearing your t-shirt and raising awareness of cortical visual impairment (CVI). Every time you wear your t-shirt, or tell someone “My child has cortical visual impairment” or explain CVI to the 1,000th person who says “I have never heard of that,” you help to raise awareness of CVI.
“At our yearly visit to the National Institutes of Health (NIH). This time they heard all about cortical visual impairment (CVI)—the leading cause of visual impairment in children in the U.S. The medical and educational fields have been slow to respond to kids with cortical visual impairment and CVI moms from across the country are joining together to change this. Here’s to the year of being a CVI tiger mom.”
Rachel shared that this was Henry’s fourth annual visit to NIH. After she provided Henry’s CVI Range Assessment report, the doctors referred to CVI as “central visual impairment” in the discussion that followed.
Share your Start Seeing CVI t-shirt photos on our Facebook page or email your photo and story to StartSeeingCVI@gmail.com.
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.
My son is visually impaired. Learning to say those words was hard. These days I am more likely to say, My son has a cortical visual impairment (CVI). CVI is a brain based visual impairment that interferes with the ability to make sense of what you are looking at. Visually impaired is an inadequate description of my son’s vision. In seven years I have learned that most of the time, when we say blind or visually impaired, we are not talking about my son who has CVI, or about children who have CVI. When we say visually impaired, we are talking about someone with an ocular impairment, which has to do with the structure of the eye. Most everything that goes along with serving a student with an ocular impairment – accommodations, Braille, early learning, education, the Expanded Core Curriculum (ECC), orientation and mobility (O&M), schools for the blind, teachers of the visually impaired (TVI), university vision teacher preparation programs – has almost nothing to do with a child who has CVI. Continue reading “CVI critical mass and advocacy”