Start Seeing CVI

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:

“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.

Math modification for CVI, Phase III CVI, school

Math modification for CVI

My son is in Phase III CVI (Roman-Lantzy) and attends first grade, in the general education classroom. Schools love to use worksheets for kids to practice math, time telling, word matching, etc. For students with CVI, and their parents, the worksheets are a constant challenge to modify. When modifying for students with CVI, consider the following questions. What is the overall concept being taught? What are the essential elements? Is it critical that a student with CVI spend his visual energy identifying an abstract black and white line drawing? Or is there a different way to teach the concept? Continue reading “Math modification for CVI” →

CVI, parents, Phase II CVI, So to speak

So to speak

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.

Continue reading “So to speak” →

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” →

cortical visual impairment, CVI, CVI advocacy, parents, 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” →