Amy Julia Becker was disoriented when her daughter was born with Down syndrome. She couldn’t imagine how things would ever work out. And she felt grief for the baby she thought she'd have, a hypothetical child who had never in fact existed. But slowly love overpowered her fear, and began to reshape her imagination.
The author with her teenage daughter, Penny."ow as Penny approaches adulthood, I return to that scared young woman with that beautiful new baby, and try to remember what I have learned."
Before Penny turns 18, we need to decide whether we will petition to become her guardians. We have been advised to set up an ABLE account since any income above $2,000 in her name makes her ineligible for Social Security benefits. To that end, we need to apply for Social Security, and for Husky-C . We need to investigate options for semi-independent living when she gets older.
Early on, fear shaped my imagination. I felt threatened by doctors who, I imagined, saw Penny’s life as a burden. I saw prejudice in my interactions with teachers. I felt like I ran into the"r word" at every turn. And hearing any word that denigrated people's intelligence stung. Developmental milestones haunted me. Comparisons to typical kids felt threatening.
I met a teenager with Down syndrome and autism who didn’t use many spoken words to communicate and carried a doll with her wherever she went. It would have been easy to see her only as a person with needs, but over the course of our night together, she was the one whose gentle presence quieted my squirming, fussy son. When I told her mother about the way he calmed down with her by his side, her mom said, “Oh yes. That’s her gift.
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