Families and Caregivers
The Impact of CVI on Families
Cortical visual impairment (CVI) is a brain-based visual impairment. Many children with CVI have eye exams within the normal range, but their brain is not able to process and interpret the visual world. Their world appears as a "kaleidoscope of meaningless color and pattern."1 Visually neurotypical people are able to go through their day without giving much thought to visual access. Our world is designed for people with average visual processing abilities. But for individuals with CVI, everything can be visually demanding.
It’s the brain that sees, not our eyes. Our visual system in the brain undergoes a complex computational process to help make sense of the visual world in just a fraction of a second. Our eyes take in the raw data of our visual world—fragments of information, color, movement and other elements of a visual scene. The brain turns this raw data into meaningful information. For our children with CVI, their brain has great difficulty making the visual world meaningful.2
"Our houses, highways, movie theaters, airports, and classrooms—and the tasks we do in them—have been engineered to match the visual abilities of the vast majority of people. An individual with CVI spends his or her day in a visual world that was designed for someone else." 3
Raising a child with CVI is a life changing, complex, and intense experience. CVI is all-encompassing and affects the whole being. CVI can impact all aspects of a child’s development—gross motor, fine motor, speech and language, behavior, and social development.
Individuals with CVI do not have access to incidental learning, which visually neurotypical peers use to build a visual library and map of their world, understanding the salient features of objects and environmental targets. Incidental learning also allows children to understand anticipatory and social cues, enabling them to figure out what is going on around them. Incidental learning happens the second we are awake to the moment we go to sleep—we are constantly taking in visual information. Children with CVI miss this completely as they move through life.
CVI masks cognition. It's important for families, caregivers, educators, and professionals to always presume competence. Access to the visual world can unlock your child's potential. Access comes with appropriate accommodations, adaptations, interventions, and instructional methodologies. Also know that standardized and cognitive tests are not accessible to children with CVI because they are not normed on children with visual impairments, nor do they have alternative, non-visual methods of assessment.
Parents often gain a depth and breadth of knowledge of CVI, attending conferences and trainings, and diving into research, articles, textbooks, and stories from other CVI families. There is a steep learning curve with CVI, but knowledge is power—power to truly know your child and know how to help them be reach their potential.
For some families, a CVI diagnosis comes after years of frustration, wondering why their child doesn’t have visual access (use of functional vision, ability to establish and maintain visual attention, recognition of objects, targets, and environments), and why their child shows certain behaviors. Often children with CVI are misdiagnosed. For example, a child with CVI may be labeled as ADHD due to inattention (CVI characteristics: latency, novelty, complexity) and hypersensitivity to peripheral movement (movement characteristic). Or a child with CVI might be labeled as autistic due to lack of eye contact (facial complexity) or inflexibility (novelty, lack of access to incidental learning and anticipatory cues). For other families, their child receives an early diagnosis of CVI, but are told that there is little hope for improvement.
There is hope. Thanks to the power of neuroplasticity our children's visual processing abilities can improve. Individuals with CVI can build neural pathways in their visual system with a carefully crafted, systematic educational approach that includes environmental and material adaptations along with unique instructional methodologies to support increased functional vision use and discrimination. CVI interventions must be based on the 10 CVI characteristics (Roman-Lantzy, 2007, 2018) and be rigorously and consistently applied throughout the school day.1 School teams need to create a visually accessible day for children with CVI, balancing complexity of environment and task, to reduce visual fatigue and ensure the child's education needs are fully met. Families often implement CVI interventions at home, helping their children incorporate vision in their daily routines, engage with adapted books and learning tasks, and other everyday CVI strategies.
To ensure children with CVI are appropriately served, there is an immense need to improve the ongoing communication between parents, educators, and the medial community, so all children with CVI get an early diagnosis and receive appropriate, systematic interventions. Children with CVI have a right to providers and educators who have a deep knowledge of CVI.
CVI and the IEP
1Roman-Lantzy, Christine. (2018). Cortical Visual Impairment: An Approach to Assessment and Intervention. 2nd ed., New York, NY: AFB Press.
2Tietjen, Matthew. “Constructing the Visual World.” October 2018. The What’s the Complexity Framework: Designing a Visually Accessible School Day for the Child with CVI. Perkins eLearning Course.
3Tietjen, Matthew. (2019). The “What’s the Complexity?” Framework. In Roman-Lantzy, Christine. (2019) Cortical Visual Impairment: Advanced Principles (pp. 92-150). Louisville, KY: APH Press.