DEE-P is partnering with CVI Now/Perkins School for the Blind to explores the link between Cerebral/Cortical Visual Impairment (CVI) and developmental and epileptic encephalopathies (DEEs), discussing the visual challenges in complex children with neurological conditions and the critical need for early diagnosis and support.
CVI Information
CVI InformationDid you know the leading cause of childhood blindness and low vision (CVI) commonly occurs alongside epilepsy?
If not, you’re not alone. An estimated 64% of kids with CVI also have epilepsy. While CVI is incredibly common, it’s also alarmingly underdiagnosed and misunderstood. In fact, most of the 65 million people who live with epilepsy worldwide haven’t even heard about CVI.
That’s why our incredible collaborators at CVI Now are helping us spread CVI awareness and reach communities where CVI commonly co-occurs. Together, we’re putting CVI on the map to increase early diagnoses and improve outcomes for every child with CVI.
How Do CVI & Epilepsy Interact?
How Do CVI & Epilepsy Interact?CVI and epilepsy are both brain-based disorders. With CVI and epilepsy, we’re seeing overlapping causes and associated conditions. There is a wide range of genetic epilepsies, such as Angelman Syndrome, Rett Syndrome, cyclin-dependent kinase-like 5 deficiency disorder (CDKL5), and SCN8A as well as structural causes of epilepsy such as focal cortical dysplasia, traumatic brain injury (TBI), perinatal brain injury, and polymicrogyria. Additionally, conditions such as Lennox-Gastaut Syndrome (LGS), Dravet Syndrome, and Infantile Spasms are important when considering CVI.
Scroll through our collaborative video series with CVI Now to learn more about CVI in kids with complex needs and the overlap between CVI and developmental epilepsies. Topics include an introduction to CVI, the CVI visual behaviors, compensatory skills, diagnosis, assessment and intervention, and advocacy. We will post new videos periodically, so check back often!
Jordan's Journey With CVI
Jordan's Journey With CVIA heartfelt look at one mother’s journey understanding and supporting her daughter’s life with CVI. Read More
Developed and presented by Lacey Smith, TVI, and CVI and epilepsy parent
This video explains Cerebral/Cortical Visual Impairment (CVI), the leading cause of childhood visual impairment. Unlike typical vision issues, CVI is caused by damage to the brain's visual pathways, making it difficult for individuals to process what they see, even with healthy eyes. Children with CVI may struggle with recognizing people, objects, or their surroundings, and may develop non-visual strategies for learning. The video highlights the importance of early identification and intervention, emphasizing that many children with CVI remain undiagnosed.
Learn more about CVI and epilepsy.
Developed and presented by Lacey Smith, TVI, and CVI and epilepsy parent
In this video we discuss the common signs of CVI include inconsistent vision, difficulty recognizing objects, and struggles in busy environments. We also discuss how a medical evaluation can confirm a CVI diagnosis.
Learn more about when to suspect CVI and explore our growing Perkins CVI Doctor Directory.
Developed and presented by Lacey Smith, TVI, and CVI and epilepsy parent
This video explores the unique visual behaviors associated with CVI and how it affects children. It explains how vision is processed in the brain and how damage to visual pathways impacts perception. Key topics include visual attention, recognition, the effects of color, light, motion, clutter, and the importance of compensatory strategies for better understanding and interaction with the environment.
Learn more about the CVI visual behaviors and The Perkins CVI Protocol.
Developed and presented by Lacey Smith, TVI, and CVI and epilepsy parent
This video dives into the importance of compensatory skills for children with Cerebral/Cortical Visual Impairment (CVI). These strategies—such as auditory cues, tactile exploration, memory, and predictability—help children navigate and understand their surroundings. The video shares real-life examples, including how Savannah, a child with CVI, uses her auditory and tactile senses in daily routines like mealtime and play. It emphasizes how compensatory skills can strengthen learning without diminishing visual development, fostering a multisensory approach to understanding the world.
Learn more about compensatory access to learning for students with CVI.
Developed and presented by Lacey Smith, TVI, and CVI and epilepsy parent
This video outlines the process of diagnosing Cerebral/Cortical Visual Impairment (CVI) and highlights key considerations for families and providers. Dr. Jem Martin, an optometrist at the NEO Center for Eye Care, explains how CVI is a brain-based visual impairment and describes the comprehensive eye assessments, functional vision evaluations, and diagnostic tools used to distinguish CVI from other visual conditions. The video also explores critical areas of visual processing, such as visual attention, memory, and guided movement, while emphasizing the importance of collaboration with specialists like neurologists, geneticists, and educators to support children with CVI.
Learn more about how CVI is diagnosed and find a doctor who can evaluate for CVI.
Developed and presented by Lacey Smith, TVI, and CVI and epilepsy parent
This video provides guidance on the next steps after receiving a Cerebral/Cortical Visual Impairment (CVI) diagnosis. It emphasizes the importance of advocating for a diagnosis to open doors to necessary resources and support, including state blindness services and vision programs. The video highlights the critical role of Teachers of Students with Visual Impairments (TVIs) in creating individualized education plans, adapting materials, and supporting multisensory learning. Parents and caregivers are encouraged to seek early intervention, request CVI assessments, and build educational plans tailored to their child’s unique needs. The video also offers tips on collaborating with medical providers and accessing community support.
Learn more what to do after a CVI diagnosis and learn about CVI assessments.
More Videos on CVI
Cortical Visual Impairment (CVI) and the Developmental and Epileptic Encephalopathies (DEEs)
Babies with CVI, Change Makers: A Podcast from APH, American Printing House
Connections Beyond Sight and Sound, Maryland & DC Deaf-Blind Project
Cortical Visual Impairment, NIH, National Eye Institute
Cortical Visual Impairment, American Association for Pediatric Ophthalmology and Strabismus
State Deaf-Blind Projects, National Center on Deaf-Blindness
Understanding CVI: What it is & Why it's an Enormous Crisis, Perkins School for the Blind
What is Cortical Visual Impairment (CVI), Little Bear Sees
If you have a suggested tool or resource, please contact us.
Cortical visual impairment: An approach to assessment - Christine Roman-Lantzy,
Disentangling How the Brain is "Wired" in Cortical/Cerebral Visual Impairment (CVI) - Lotfi B. Merabet et al (Harvard Medical School)
Impact of Cerebral Visual Impairments on Motor Skills: Implications for Developmental Coordination Disorders - Sylvie Chokron and Gordon N. Dutton (University of Paris-Descartes and Glasgow Caledonian University)
If you have a suggested article, please contact us.
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