National CVI Advocacy Call 3/14

A call for CVI advocacy“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:
Dial: 1-866-939-3921
Code: 46438061

 

CVI-TVI Survey

A group of teachers of the visually impaired (TVI) have created a survey, link below, to find out how colleagues learn about cortical visual impairment (CVI). If you are a TVI, please complete the survey and share with your networks.

We are fellow Teachers of the Visually Impaired who are working with collaborators in a study group to investigate Cortical/Cerebral Vision Impairment (CVI). We are interested in learning more about how our colleagues across the US are gaining knowledge about CVI and how comfortable they feel about addressing this visual condition.

Matt Tietjen and Peg Palmer are TVIs working for BESB (Bureau of Education and Services for the Blind) in Connecticut.

Ellen Mazel is the CVI Program Manager at the Perkins School for the Blind in Watertown, Massachusetts and author of the blog “CVI Teacher.”

We guarantee that we will not use or share any of your personal information, your job or your personal circumstances. All responses will be completely anonymous.

Thanks for your help on this. We really appreciate the time you will take to fill out the following questions.

CVI-TVI Survey

Start Seeing CVI at NIH

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.

From Rachel:

image1“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.

CVI critical mass and advocacy

CVI critical mass and advocacy
CVI critical mass and advocacy

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”

CVI Parents have three problems

CVI Parents have three problems
CVI Parents have three problems, photo by Patricia Harrington Simanek

My son was diagnosed with cortical visual impairment (CVI) as a newborn in 2011, before he came home from the children’s hospital neonatal intensive care unit. Like many kids who have CVI, he had a stroke. Or more specifically, hypoxic ischemic encephalopathy, HIE. His birth experience meant absorbing the diagnoses of infant stroke and CVI, as well as the great unknown that goes along with that, because CVI is not a stand alone diagnosis. The doctors, neurologists, called it cortical blindness. This was a day or two after hearing the heart breaking words infant stroke for the first time, a phrase that is not comprehensible in the moment. Cortical blindness, the neurologist said. Because his impairment involves the brain, and not the eye itself, there is nothing you can do. Instead the doctor should have said, Because his visual impairment involves the brain – there is so much you can do. This should be the message to all parents whose child receives a diagnosis of CVI. Continue reading “CVI Parents have three problems”