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What does believing people with CVI mean? Catherine and Riley’s journey uncovering CVI
High academic achievement nearly masked Riley's struggles with his vision, until persistence uncovered a crucial CVI diagnosis.
Catherine is a mother of nine, two of whom have a diagnosis of Cerebral/Cortical Visual Impairment (CVI). She shares with us her experience raising two children with CVI, each with their own unique challenges, needs, joys, and interests.
The first step to uncovering CVI is believing a child’s experience and knowing that their behavior is communication. Catherine Leake, mom to Riley and eight other children in Kansas, is a seasoned disability advocate and parent. She knows exactly how essential that first step can be.
At just six weeks old, Riley and his twin sister—both born prematurely—were placed in Catherine’s care through foster services. In addition to his early birth, Riley was diagnosed with Neonatal Abstinence Syndrome (NAS), a condition caused by withdrawal from drugs he was exposed to in the womb. Babies with NAS can experience a range of withdrawal symptoms shortly after birth.
Spotting low vision in early childhood
Despite his early diagnosis, Riley’s development during his early years appeared right on track, and Catherine had no concerns about his vision. It wasn’t until she brought both twins to an ophthalmology appointment—originally for his sister, who had been bumping into walls—that she agreed to have Riley checked, too, just as a precaution. To her surprise, the doctor revealed that Riley had very low vision. Catherine was stunned. “I remember the doctor holding up a red ball and a red airplane across the room and he could not tell the difference between the two,” she recalls. “I was like, ‘What? How could I miss this?’ I was just shocked.”
After that appointment, Riley saw an ophthalmologist every six months and at each visit, his glasses prescription increased. He needed stronger glasses and often said, ‘I can’t see,’ shares Catherine. Riley frequently complained about things “changing” in his world, such as his books and toys, which was frustrating for him.
Even with Riley’s repeated complaints about not being able to see, he excelled academically in preschool. His teachers were so impressed by his abilities that they begged his parents to consider allowing him to skip a grade. Catherine, however, decided to keep him with his twin sister and peers, valuing the social, emotional, and foundational skills to support his learning and growth. At age four, Riley began playing the violin and continued thriving in all aspects of his life. By age seven, he tested into the gifted program and was reading at a 12th-grade level.
Growing frustrations
Over the next few years, Riley started getting more frustrated with his vision. Things he used to enjoy, like playing the violin, became increasingly challenging. Riley told his mom that he couldn’t see the music, although the music sheet was right in front of him. She kept seeing him shift the music sheet around, trying hard to find a spot where he could ‘see it better.’ It really worried her.
The frustration didn’t stop with music. Sports, too, became challenging. “Riley is extremely fast. He loves jumping over objects, but he cannot catch a moving ball,” Catherine explains. “He would say things like, ‘I can’t see the ball until it’s in my hands.’” Although Riley is naturally athletic, his difficulty tracking and catching a moving ball didn’t match his physical abilities, leaving Catherine puzzled.
Some days, it would seem as if he were seeing well, and other days, he would absolutely melt down and cry, stating, ‘I can’t see’ which was deeply puzzling as his mother.
Catherine Leake
Another layer of frustration became evident in new environments. Riley became extremely anxious in new places, which did not match his naturally social personality. As Riley’s frustrations grew, Catherine knew she had to seek answers from someone who could see the full picture.
Meeting Dr. Lawrence and getting a CVI diagnosis
As Catherine searched for answers about Riley’s inconsistent vision and increasing frustration, she turned to a familiar face for help. Dr. Linda Lawrence, an ophthalmologist and leader in the CVI field, was already seeing Riley’s sisters, Elliot and Tatum, who both have Down syndrome. Dr. Lawrence has deep expertise in CVI and is especially aware of how often it occurs alongside other brain-based and genetic conditions like Down syndrome and cerebral palsy. She is able to look beyond the surface and help understand the complex visual challenges Riley was facing.
Riley’s birth history, which included prematurity and Neonatal Abstinence Syndrome, prompted Dr. Lawrence to do a CVI screening checklist. Prematurity and NAS can increase the risk for developing CVI due to damage or disruption to the development of the visual pathways or processing areas of the brain.
The results of the CVI screener matched up with Riley’s visual challenges, and for the first time in 9 years, Catherine and Riley had answers. After a full clinical assessment, Dr. Lawrence diagnosed Riley with CVI.
Dr. Lawrence often emphasizes the importance of being proactive in identifying the visual behaviors commonly seen in individuals with CVI. As ophthalmologists, she explains, “We encounter children with Down syndrome, cerebral palsy, or other genetic differences, and if there’s any structural issue or injury in the brain, we should be closely examining for CVI.”
Riley’s self-advocacy and compensatory skills
Today, Riley continues to demonstrate strong self-awareness and has become such an amazing advocate for himself. For example, noise and excessive motion is stressful for him. He recently shared with his mom that if he knows the environment will be chaotic, and that chaos will end at a certain time, he can manage it. But in unpredictable environments, he says he just “can’t see.” When Catherine asked more about that, Riley explained that when things get too chaotic, he has to focus so hard on everything going on around him that he just can’t see anymore. “He’s using so much of his energy just to see and try to adjust,” Catherine said.
CVI and details
Catherine describes Riley as extremely detail oriented: “Riley is an amazing artist and has won several awards for his art. It has always been so interesting to watch him create art. He will start with the most random detail. Like if he is drawing a person, he may start with an earlobe or a mustache, rather than a head. Those details and features stand out to him most.”
“How do you find people in a crowd?” Catherine asked, knowing how closely Riley pays attention to details. “I just find one thing that doesn’t change about people. Like our pastor—I’ve noticed his head is shorter from forehead to chin.” He uses those details to recognize people. He recognizes his older sister by her perfume and can spot his best friend because he always wears a hat.
Riley disliked word searches until recently. His vision teacher recently gave him a large print version of a word search. To Catherine’s surprise, he eagerly spent two hours working on it. Riley explained that he enjoyed it because it was science-themed, and it helped him learn new vocabulary, which he loves. Also, the bigger text made it so much easier for him to see, reducing eye strain and fatigue. For the first time, he could actually focus on what he was reading instead of struggling just to see it. The experience made such a difference for him that he asked for a large print Bible. When he got it, he was absolutely thrilled.
This is what believing people with CVI looks like:
A child who isn’t afraid to share his frustrations, because he knows someone’s listening, a provider who trusts her expertise and instincts, and a mother who never puts limits on what she believes her child can do. Believing people with CVI means a world with more individuals who can navigate in their own way—and who prove that different doesn’t mean less.
