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What parents of children with Down syndrome should know about vision
Read about how two sisters, both with Down syndrome, see the world differently, and how close observation can change everything.
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.
In Catherine Leake’s large family, each child brings a unique way of engaging with the world. Her daughters, Elliot and Tatum, both have Down syndrome—but their experiences with vision couldn’t be more different. Through careful observation, strong advocacy, and deep love, Catherine is learning to meet each child where they are and help them navigate the world in ways that work best for them.
Two different developmental paths
Elliot, now five, was born six weeks early and needed oxygen support for nearly two years. By eight months old, she was already wearing both hearing aids and glasses. Catherine describes Elliot as “the most observant child her family had ever seen, often staring at people who enter the room and showing excitement by kicking her legs when she sees familiar faces.”
Despite being a later walker, Elliot began using sign language early. “She began imitating facial expressions early on,” Catherine recalls. “By the time she was two or three years old, she knew several hundred signs.” Elliot frequently points to pictures and objects. That’s a clear sign that she depends heavily on her vision to learn and connect with the world.
Tatum, now three, followed a very different developmental path. Catherine noticed early signs that Tatum might be experiencing visual difficulties, especially when compared to Elliot’s early visual milestones. Tatum required extracorporeal membrane oxygenation (ECMO) at birth. ECMO is a life-saving treatment used when the heart or lungs cannot function on their own. She also lives with significant hypoglycemia, and requires immediate attention when her blood sugar drops too low.
Tatum’s visual development
At first, doctors diagnosed Tatum with Delayed Visual Maturation (DVM). This term is often used when a child’s visual development appears slower than expected. But Catherine had concerns beyond the typical developmental delays common in children with Down syndrome. “Tatum wasn’t tracking, she didn’t notice her parents when they walked into the room. She wasn’t making eye contact and she was disinterested in toys, especially ones without light or motion,” Catherine explains.
By the time Tatum turned two, her medical records were updated to “Suspected CVI.” Though she hasn’t received a formal CVI diagnosis yet, she’s now referred for a Functional Vision Assessment (FVA) through her school district and is receiving in-home services due to a severe silicone allergy.
The role of sensory support
Unlike her older sister, Tatum relies heavily on her compensatory skills. “She rarely uses her vision and has no interest in toys, unless they have sound or light, particularly ones with sound and vibration,” says Catherine. “She will not respond to unfamiliar people walking into a room, and she will completely ignore them. But, if I walk into the room and talk to her, she will light up with excitement.”
Tatum is deeply motivated by sensory experiences. “She has a strong interest in music. She frequently seeks physical touch, often wanting to be cuddled, tickled, or engaged in a close physical interaction,” Catherine shares. When playing alone, Tatum tends to repeat certain actions to meet her sensory needs—like tapping her head, blowing raspberries, or scooting on her bottom to feel objects around her. “Her most treasured plaything is her vibrating board that she will sit on, lie on, or rest her arms on for long periods of time.”
Cozy corners and cuddles are in Tatum’s comfort zone
She also thrives in outdoor settings. She loves activities that involve motion, such as swinging, stroller rides, and especially feeling the wind on her face. Catherine has noticed that Tatum often seeks physical boundaries when she’s in unfamiliar environments. “Almost like she wants to tune things out or she wants to have that boundary—she always has her head or her hand against the wall. She will not engage in the center of a room, particularly when the room is unfamiliar.” During a recent trip to visit family, Tatum was unusually fussy. Catherine eventually realized that once she helped Tatum find a spot against a wall, she calmed right down.
Tatum may be quieter and more reserved than Elliot, but she lights up when her siblings are nearby. “She reaches out to them for closeness and enjoys cuddling or simply laying her head on them,” Catherine says. She flourishes in calm, one-on-one settings and prefers a slower, gentler pace of life—unlike Elliot, who is “kind, loud, hilarious, and passionate,” and thrives in the center of the action.
The sisters’ happy moments reflect those differences. “Tatum gets the giggles when we put lotion on her each morning and night, when we tickle her palms, or when she finds her way to the floor vent and has the air blowing in her face. She makes the best faces (we call them her ‘meme faces’) and is very even-tempered and gentle,” says Catherine. “Elliot is her happiest in the middle of a dance session with her siblings or reading books with her big brother.”
The power of compensatory skills
One moment that stands out to Catherine illustrates just how differently Tatum learns. While Elliot picked up clapping simply by watching and imitating, Tatum learned in a more hands-on way. She learned to clap by physically placing her hands over others’ while they clapped, repeating the motion until she figured it out. It was a clear example of how Tatum’s brain processes the world through physical experience, not just observation.
These small, powerful moments have helped Catherine adapt her parenting to support both of her daughters’ individual needs. “Raising a big family with multiple needs and CVI is a lot to balance at times. It requires much advocating for their needs and a lot of detective work as we find what works for each one. It is also a joy though to see them excel when they are supported and accommodated in a way that allows their strengths to shine,” she says.
To other parents navigating a DVM diagnosis or suspecting CVI, Catherine offers this advice:
I would encourage parents to note anything unusual about their child’s vision and to keep bringing those observations to an ophthalmologist. I think parents usually know when something isn’t quite right. Don’t be afraid to ask for a second opinion or request a referral if you feel like you’re not being heard.
-Catherine Leake
Celebrating the ways Elliot and Tatum shine
Catherine’s parenting journey is a powerful reminder of the importance of noticing the small things—how a child responds to light, reaches out for closeness, or lights up at the sound of a sibling’s laugh. Through deep observation, intuition, and ongoing advocacy, she has come to embrace each of her daughters’ unique ways of engaging with the world. Elliot thrives on visual cues and social connection; Tatum finds meaning through sound, touch, and movement.
Both paths come with their own challenges—but also immense joy, wonder, and discovery. In honoring their differences, Catherine is building a family life that celebrates who her children are, how they grow, and the many ways they shine.
