NOAH HUDSON SLAPPED HIS TINY HANDS on his parents’ kitchen table, pushed aside a half-eaten banana pancake, and tried to wriggle free from his highchair. His mother held on to him with one hand while steadying the computer screen she was looking at with the other. “So sorry,” Sarah Hudson told the occupational therapist on the video call. “One sec….” Noah flung his spoon to the floor and let out a cheerful squeal. Sarah gave an exhausted half-laugh. “You know, he can be a handful,” she said of her 22-month-old son, who was born with a developmental disability.
It was early March, and morning sunlight filtered through the family room windows of the Hudsons’ rented Central Park home. Noah’s blue therapy mat was folded in one corner of the room; books written in Braille were on the kitchen countertop, next to a calendar Sarah filled with reminders for doctor visits and therapy sessions. A miniature backpack, with Noah’s feeding pump packed inside, leaned against a wall.
Born six weeks premature, Noah had missed most of the cognitive and physical benchmarks for children his age. His team of doctors—which had grown exponentially since his first weeks in the neonatal intensive care unit at Children’s Hospital Colorado—inundated his parents’ email inboxes with unpronounceable diagnoses. Noah lacked a right eye and much of his right ear and right nostril. He’d already undergone surgeries to fix a cleft palate and cleft lip; another would eventually be needed to increase the size of one of his orbital bones. A scan of his skull revealed an open canal that ran from his nasal cavity to his brain. His hypothalamus and pituitary glands—essential for regulating everything from organ function to heart rate—were “irregular,” according to one specialist. His one, blue eye had at least some vision, though it could take another year before doctors fully understood what Noah was seeing.
Spencer, Noah’s dad, 34, was at work as an account executive for an IT company, which meant Sarah, 33, would handle much of Noah’s day on her own. Today, there’d be a video call, an athome therapy session, an in-office therapy session, at least six feeding tube sessions, and—Sarah hoped—two naps.
Noah is one of an estimated 7.4 million Americans living with intellectual and developmental disabilities. Known colloquially as IDDs, these disabilities can include a broad range of conditions such as cerebral palsy, Down syndrome, and autism spectrum disorder. Roughly 5,700 Colorado toddlers and infants have a diagnosed IDD, a number that has grown over recent years as the state’s population has increased. Once considered a marker for early death in the most serious cases, today people with IDDs are living longer lives. Adults with Down syndrome, for example, live nearly three times longer than they did three generations ago.
That longevity has delivered untold joyous moments, ones that were rare until recently: school graduations, first jobs and paychecks, and memories spun from being able to spend time with a loved one. Longevity has also created extraordinary challenges, most often revolving around finances and uncertainties surrounding the future. It’s more likely these days that someone with an IDD will outlive their parents, which has put pressure on familial caregivers to put in place supports that will last long after they’re gone.
Parents of those with IDDs—both young children and those
