Posted by: Jennifer | August 29, 2008

Sex, Santa Claus, and Down syndrome…


Most people know that I have a sister and two brothers with Down syndrome. It is not uncommon for parents, friends, and other professionals to ask how my parents told me about my sister having DS. This of course depends on a variety of factors…recently I found myself describing it this way:

Telling a child about DS isn’t an all or nothing event. It’s like anything “magical” or mysterious in life: sex, Santa Claus, DS… You provide just enough information to answer the immediate question and wait for the child to lead further. As they mature, they will want more insight and will ask more questions as they are ready.

Obviously this works when there is a small age difference between siblings. When April was born I was nearly 10 years old, Derek was 7, and Danny 5. My parents felt it prudent to tell us about April’s diagnosis. After meeting our sister for the first time my father and his sister took us to a little diner. April had been so little and cute with her blond hair and blue eyes. We were eating lunch when my dad told us that April had DS. She might learn a little differently, but we were going to love her just like we loved each other. I had no real experience with what this might mean. I called to mind the “Level 5” self contained classroom at my elementary school and the children in it. I nervously asked, “will she be r-e-t-a-r-d-e-d?” I spelled it so my brothers wouldn’t know the word I used. I knew it wasn’t a good word. “No Jenny,” my dad said trying to offer some comfort, “she might just learn differently than you.”

I don’t remember what questions I asked after that. April looked like a “normal” baby to me. She did what other babies did. She cried, she ate, she smiled. As I got older I learned what DS was. Or so I thought. Each day I am learning what DS is – and I am constantly amazed how much more there is to know! Each day I am still asking questions.

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Responses

  1. Hi Darling, I had never heard the whole story before. I didn’t know that Aunt Jean was with you. I think Dad handled it beautifully. He also went to the bookstore to look up information about DS and found one book with only one page about DS. No internet then. Someone from the local parent group came to the hospital to visit-remember Nila Ledford and the giant picnic at her house every year? When she told me her daughter was using the computer at school it gave me hope and I have never looked back! By the way you will have to help us a little more with April’s Facebook.


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