CVI – Page 10 – Start Seeing CVI

cortical visual impairment, CVI, Dr James Jan

Dr James Jan quote

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

CVI, CVI Parent Survey, parents

CVI Parent Survey

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.

CVI Parents/Caregivers Survey

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” →

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” →

christine roman, CVI, cvi diagnosis, CVI Parents have three problems, parents, Phase III CVI

CVI Parents have three problems

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” →