Updated: May 23, 2020
Guest Blogger Stephanie Hall, M.S., OTR/L, ITFS: Cortical Visual Impairment (CVI)
I have been an occupational therapist for 10 years. It’s hard to admit when I don’t know much about a topic or diagnosis I come across – especially at this point in my career. But it happens.
Three years ago, I began a journey I didn’t know I was going on. It started with three words: Cortical visual impairment (CVI).
CVI requires different treatment than ocular visual impairments. If you’re familiar with this diagnosis you are also in the (very small) minority.
My CVI journey began with a bright and beautiful 4-year-old girl, Grace. She is the daughter of my husband and I’s close friends. After having my son and while pregnant with my daughter, I decided to quit my job as a clinical evaluator for the state of North Carolina’s early intervention program and start my own company.
Grace’s OT had just left her company and they were in search of a new therapist.
The stars aligned and Grace became my client.
Grace’s medical history was somewhat familiar to me because I had been around her parents since before she was born. She was small for gestational age (SGA) at birth and was therefore automatically eligible for the early intervention program.
Later in life, Grace was diagnosed with stroke in utero. As a baby and young child, she had various difficulties with feeding (requiring some time with a feeding tube), sleep, and meeting her milestones.
Very luckily, Grace has a grandfather that was an ophthalmologist. He was the one who first noticed that her tracking was off and suggested that her parents look into further evaluation. Grace was diagnosed with optic nerve hypoplasia and CVI.
Her parents were extremely determined and tenacious in learning all about her diagnoses. In their research they came across the Pediatric Cortical Visual Impairment Society (PCVIS), Perkins School for the Blind, and the work of Dr. Christine Roman-Lantzy.
Not knowing much about the diagnosis of CVI, I found myself unsure if the treatment strategies I was using were optimal in im