12/24/2025
I get asked that question a lot, usually in a quiet voice.
“What happens to adults with Down syndrome when their parents cannot look after them anymore.”
People rarely expect the answer to sound like mine.
I am the fourth of five kids. Our family story twisted and cracked in places, like most, but the part I always come back to began in a hospital room in the mid seventies, when my mother refused to sign a stack of papers.
Her last baby, my sister Rosie, had just been born. She was tiny, with almond shaped eyes and a soft brush of dark hair. Within hours, the doctors were using words that sounded cold and heavy. “Severe delay.” “Institution.” “Best for the family.”
They told my mother that Rosie would never walk, never talk, never feed herself. They suggested a home two hours away where, they said, she would be “taken care of.” They had a brochure ready, the kind with staged photographs of children in matching sweaters.....
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