Updated: May 23
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 improving her visual-motor coordination and overall fine motor skills. With encouragement from her parents, I began to take courses on CVI given by Perkins School for the Blind in 2017.
I was also fortunate to be mentored by a very knowledgeable Teacher for the Visually Impaired (TVI) who was consulting with Grace’s family from Philadelphia.
I learned that CVI has become the most prevalent pediatric visual impairment in the United States as well as other developed countries.
CVI is linked to many diagnoses that we often see as OT practitioners (e.g. asphyxia, neonatal encephalopathy, intraventricular hemorrhage, periventricular leukomalacia, cerebral vascular accident, central nervous system infection, structural abnormalities, chromosomal disorders, metabolic disorders, trauma).
This is a diagnosis that is very often unintentionally overlooked by practitioners, which unfortunately comes with negative consequences to the children and their families.
Unfortunately, CVI is often treated in the same way as ocular visual impairments; through compensatory strategies such as Braille. With this being said, this limits the building of functional vision which can be done by encouraging neuroplasticity.
If there is a take-home message to you from this blog post, it is that with proper intervention, children with CVI show improvements in their vision.
CVI has 10 behavioral characteristics: color preference, need for movement, visual latency, visual field preferences, difficulties with visual complexity, need for light, difficulty with distance viewing, atypical visual reflexes, difficulty with visual novelty, and absence of visually guided reach.
Cortical Visual Impairment versus Austim Spectrum Disorder
As an OT, I realized that some of these characteristics can be confused with signs of other prevalent diagnoses such as autism spectrum disorder (ASD). Children with ASD enjoy watching objects that move such as a spinning fan, and children with CVI will do them same because movement helps their brain to better process the visual information.
They often have trouble making eye contact with others, and children with CVI do as well because faces are often too complex to visually process.
Children with ASD often show a preoccupation with light. Children with CVI are able to process light easily and they tend to favor it.
These are things I keep in mind as I work with children with a diagnosis of ASD – especially one with a history of a neurological condition.
Treatments for Grace
As for Grace, I learned that she has a left visual field preference. By presenting objects in that field, she has a better chance to visually process. Furthermore, this also helps her begin to naturally expand her visual fields.
Individualized Preferences and Backlit Surfaces
I learned that her favorite color is pink. Therefore, I try to use that color to gain her visual attention to words, objects, and pictures. Like most children with CVI, Grace learns best when first presented with visual information on a backlit surface such as an iPad.
Simplify Learning Environment
I learned that like most children with CVI, Grace needed me to simplify her learning environment. To minimize distractions a large black oak tag covered the table. A black trifold poster board blocked extraneous visual input around the workspace.
She uses a slant board to keep her work out of the notoriously difficult lower visual field. Working in a quiet, moderately lit room is optimal for Grace. The less additional sensory input, the better focused she can be. Additionally, Grace also requires lots of visual breaks, since processing visual information is terribly hard work for a child with CVI.
Dr. Christine Roman-Lantzy
Dr. Christine Roman-Lantzy has done extensive work in the area of CVI and developed an assessment specifically for CVI. Professionals that have shown to reliably score the CVI Range, have taken various CVI-specific coursework, and have experience working with CVI are encouraged to apply for the Perkins-Roman CVI Range Endorsement through the Perkins School for the Blind.
I received my endorsement this past Summer 2018. I look forward to learning more about how to best treat children with CVI. To date, I have 100+ hours of CE specific to CVI, have given a CVI in-service to our county’s early intervention program (case managers and clinical staff) and attended the PCVIS annual meeting in Omaha, Nebraska.
My Support Networks
I created a CVI Professionals Facebook group called Cortical Visual Impairment Professionals, and, with Grace’s parents, started a local CVI-specific parent support network. In the future, I will continue to advocate for these children and their families.
As for Grace, she is now in 1st grade in a regular education classroom. In school she receives vision services, OT, and orientation & mobility (O&M). She can read and write in print. She loves to dance ballet and her favorite subject is math.
I look forward to witnessing the amazing things she will do in her life. So, for both Grace and I, the journey continues!
References & Resources:
Roman-Lantzy, Christine. (2018). Cortical Visual Impairment: An Approach to Assessment and Intervention, Second Edition. New York, New York: AFB Press.
Perkins School for the Blind CVI Hub: http://www.perkinselearning.org/cvi
About the Author from www.TriumpTherapy.com
Stephanie Hall, M.S., OTR/L, ITFS holds a B.A. in Psychology from The State University of New York at Stony Brook. She also holds a M.S. in Occupational Therapy from The University of North Carolina at Chapel Hill.
Additionally, she has practiced occupational therapy in Pennsylvania, New York, and North Carolina. Her memberships include: American Occupational Therapy Association, North Carolina Occupational Therapy Association, and Pediatric Cortical Visual Impairment Society.
She is a Certified Yoga for the Special Child© Practitioner, a Certified ChildLight Yoga© Instructor, and a Licensed Yoga 4 Classrooms© Trainer. Stephanie has a passion for animal-assisted therapy which she would like to offer through Triumph Therapy in the future.
Stephanie has specialized in pediatrics her entire career and has worked in the home, clinic, daycare, preschool, and school environments. She has taken extensive coursework (100+ hours) on Cortical Visual Impairment (CVI) through Perkins School for the Blind. Furthermore, she also received the Perkins-Roman CVI Range Endorsement in 2018.
Stephanie lives in Cary, NC with her husband, son, daughter, and dog. She enjoys traveling, spending time with her family, and learning about nutrition.