The Fortunes and Sorrows of Individuals with Cerebral Visual Impairment

True Story 1 Promoting Functional Vision Assessments to Identify Overlooked CVI Patients

A nearly three-year-old toddler, identified through special education evaluations as having a developmental delay and classified under physical and mental disabilities, required assistance from others for feeding, wore diapers, and lacked verbal communication skills, mostly expressing themselves through physical actions. They were placed in a self-contained special education class for young children.

The observant special education teacher noticed that the child "stared at lights or gazed without purpose," "often kept their gaze fixed on objects hanging from the ceiling and spinning in the wind," and "was unable to see a specific object in a certain environment, yet could see the exact same object in another environment." Alert and attentive, the teacher actively sought assistance from a visually impaired education teacher and the National Teachers' Association (NTA).

Through direct observation and assessment, we found that aside from the visual behaviors previously observed by the teacher, this child also exhibited other behavioral characteristics of cortical visual impairment (commonly referred to as CVI), including:

"A strong color preference for red and yellow"
"Requiring the use of moving objects to maintain visual attention"
"Hesitant and unsteady movement due to an inability to focus visually in a classroom with a complex and cluttered visual background, yet capable of visual focus on a brightly colored, large-block slide in a relatively simple visual environment outside the classroom, walking toward it steadily"

Along with other CVI visual behavior characteristics which we will not list in detail here.

Another crucial piece of information—which felt like striking gold—was that the child had a medical diagnosis of "abnormal central nervous system transmission of the optic nerve, a condition that cannot be surgically treated." Because CVI is caused by disruptions in the brain's visual processing center and visual pathways, this diagnosis brought clarity to something our teachers frequently observed—that the child had visual problems, yet eye examinations showed no abnormalities and failed to point as clearly to such a diagnosis. The teacher also relayed what the parents were told: "The hospital stated that because the child does not understand the doctor's instructions, their visual acuity level cannot currently be measured." This aligns with a common situation teachers encounter: "not knowing how severe the visual impairment is," which in turn prevents individuals from obtaining educational or social welfare resource services after meeting the thresholds for visual impairments. This also highlights the importance of "visual behavior assessments" when visual acuity levels cannot be measured, particularly during early childhood. Because human beings rely on vision to learn, remember, and understand things far more than any other sensory organ—according to research, accounting for nearly over eighty percent—the rapid golden period of plasticity for visual learning, memory, and understanding occurs during infancy and early childhood, extending up to the age of ten. The inability to use vision for learning, memory, and understanding during early childhood (excluding problems with hearing and vocalization structures) hinders comprehensive development. This explains why this toddler, at three years old, still lacked language skills (their speech therapist was also perplexed, but no longer is). Inability to use vision for learning, memory, and understanding during infancy and childhood not only impedes language development, but also hinders physical motor development because without visual understanding, there is no motivation to make meaningful physical movements (their physical therapist was also perplexed, but no longer is). It is evident that this child's developmental delay classification stems from this factor. However, since the child was already three years old, training had to be executed as a "forced march," and all of us had to take stock of our current resources.

Through discussion, we all reached a consensus that this toddler required more observation: under what environment does the child exhibit the best visual behavioral performance? Based on this, we would design curricula and interventions (teaching and practice). However, the dilemma arose: more observation and practice require manpower. Given the current staffing provided by the government, implementation is difficult. Since the child spends the entire day at kindergarten, where else is there a better place for observation, practice, and growth with more time than here? We decided to learn and understand CVI together. The NTA's visual impairment rehabilitation project funding supported the cost of an assistant for the child to attend school for half a morning every day. The assistant recorded observations under a well-designed observation sheet, learned alongside the teacher during instruction, and accompanied the toddler in practice (mornings being when the child had the most energy).

After two to three months of the teacher initiating the training required for CVI and the assistant providing extended hours of accompanied practice, the child developed the motivation to speak (emitting babbling sounds during interactive expressions, gradually reducing reliance on physical actions), and slowly became able to engage in meaningful visual manipulation without relying solely on color. Purpose-grade gazing also gradually decreased (indicating that what they saw had meaning). This progress encouraged all of our teachers and therapists.

True Story 2 Learning to Use Remaining Vision to Rebuild the Lives of CVI Patients

The NTA served a newly turned 16-year-old case referred by a hospital social worker who experienced visual impairment caused by a brain tumor. I remember our first meeting was in the hospital room where the case was staying the day before discharge. After a brief interaction, I felt the room was filled with the parents' grief and the patient's fear. I accepted their grief and fear and shared stories of rehabilitation from predecessors who had experienced the same grief and fear, thereby opening the window of will to survive for both the parents and the patient.

After discharge, through several home visits and hospital room visits (follow-up treatments) involving conversations (rehabilitation counseling and joint rehearsals of immediate skills needed by the patient—such as practicing how to independently complete an entire bathing procedure, as failing to complete these independently was extremely humiliating and embarrassing for the patient; mastering it signified a rebirth), we accompanied the patient in planning and executing a rehabilitation plan: training on utilizing remaining usable vision for writing, daily living operations, and mobility (such as learning new, unfamiliar mathematical symbols that are simple in stroke like the size of a fist, despite being extremely blurry at close range, with a small field of view and very slow processing speeds due to unresolved clarity issues), psychological counseling, training in new independent literacy and living mobility skills, and assistance at both regulatory and practical levels to return to campus and continue studies. The student was on academic suspension during the intensive rehabilitation training period, and the NTA's Visually Impaired Rehabilitation Service Project supported all funding, hiring a rehabilitation teacher to provide instruction.