As many as 700,000 adults in the U.S. with a disability like autism live with parents or another family member who’s at least 60 years old. What happens when those caregivers are gone? One sibling confronts her past and likely future.
Ellie was seven when she asked for a rat. We were strapped into our bucket seats in the minivan as our mother ferried us somewhere that is now lost to history. “Not while I’m alive,” my mom said over her shoulder, cranking the wheel as she turned down another street.
My sister sat quietly for a few seconds, absorbing the rebuff. Then she turned to me and smiled, two buckteeth pushing over her bottom lip.
“Ciara,” she said. “When mom dies, we get a rat.”
Eight years ago, after Ellie—not her real name—turned 18, becoming an adult in the eyes of the law, a piece of paper was filed at a King County Courthouse formalizing a decision that was reached without much discussion, drama, or fanfare. If my mother died, one of her sisters would become Ellie’s guardian until I turned 30, at which point I would take over.
Ellie still sleeps in her childhood bedroom and our mom still drives her around Bellevue, where we grew up. She schedules Ellie’s doctor appointments and manages her money. She trims her toenails. Ellie doesn’t want a rat anymore but when our mom dies, she’ll get me.