Annabelle stuck a straw in her cup and announced, “Sophie says she doesn’t want to have Down syndrome.”
posted Wednesday July 4th, 2012
From time to time over the years, the folks at KJZZ — the NPR affiliate here in Phoenix — have been kind enough to allow me to share some of my stories about Sophie. Typically, these pieces end on a high note. Not this one.
You can read it or listen to it here.
(And here’s the (almost) complete archive of my KJZZ commentaries.)
It’s not about flags or fireworks, but I think it’s fitting that they are running it today, Independence Day.
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Hi Amy,
I listened to your story on KJZZ this morning. As the mother of a 19 year old son who has autism and Down syndrome, I was a bit dismayed to hear you say that Sophie has a genetic *defect*. I prefer to think that Christopher is the man with a bit extra. He had a part time minimum wage job this summer (more than many people his age). I don’t see limitations, rather, opportunities. I found it interesting that you opened your comments with the girls getting lemonade. Even though the old bromide about taking lemons and making lemonade is just that, you may wish to open your mind and heart to the things that Sophie can and might do…she would rock as a dentist who knows how to work with people with developmental disabilities.
Regards,
Caroline
I love your radio voice. Do you remember that’s how we met?
I don’t love the pain we share. Is is wrong to maybe wish for just a little lower “functioning” of our kids in order to bring about a little less disappointment? Sigh.
Robert, don’t ever wish for that. My lovely daughter with DS was a happy, verbal teenager until she became severely depressed at age 15. She lost her speech, her ability to follow directions and her ADL skills. Now at 17, on her second try of SSRIs she is finally parroting a few words. I’m not sure if we’ll ever get our daughter back