Staying Up When You’ve Only Got Down
Dear Aunt Bossy,
My daughter has Down Syndrome. She is high functioning and has been a delight to our family since she was born.
Our problem is the public, and some of my friends. When people see her, or talk to me when she is with me, they treat her like an infant or a dog, or someone who couldn’t possibly understand language. They baby talk, or talk loud and slow, or pat her on the head.
I don’t know what to do about this, or what to tell her about it. I’m sure she must notice. She is savvy and very funny. A woman asked her what sports she likes, and she responded that she was “handicapped” and doesn’t like and isn’t good at sports. The woman said, “Well the Special Olympics are for everyone.” My daughter answered, “Not for people who don’t like them because they aren’t good at sports.” The poor woman couldn’t get away fast enough.
I explained later that many people find the word “handicapped “upsetting, and perhaps she shouldn’t use it. She said, “Why not? It’s true.” She then pointed out that her dad is “handicapped” when it comes to housekeeping. I have no idea where she even learned the word.
She is twelve and is always looking around for work she might be able to do. Another friend told her one day she could do anything. Her answer: “That’s not true.” (Truth is a big thing to her.)
She can read well enough to sort things and says she wants to be a librarian. She tells me she knows she is different from other kids, but says she is happy the way she is.
I feel so fortunate, and I do have professional help and advice with her medical and educational growth. I just want to know how to keep people from acting like fools around her.
Up, not Down
Dear Up,
What a blessed woman you are! I’m sure you realize that most people who act awkward or say stupid things around your daughter mean well.
If you have regular friends who behave in this manner, just sit down and tell them about her and how they can talk to her as if she were just like their children. If your daughter doesn’t understand something they say, it sounds as though she would ask for clarification in her desire to get to “the truth.” Be sure you make them aware on a regular basis of the things she does do well.
If you catch people sentimentalizing her, call their attention to it and tell them that she does not define herself by her condition. You don’t have to embarrass them, but be clear.
If someone is really off base and doesn’t get the hint, just say “You can talk to her like you talk to your friends. She isn’t a companion animal.” That ought to do it. With her sense of the truth, and her sense of humor, you can probably encourage her to start barking when that happens in her presence, and your problem will be solved with that person, whom you will never see again, fortunately.
In any case, both you and your daughter are very lucky to have each other. It sounds as though you are both doing very well.
Best, Aunt Bossy
Earlier and Later than You Think
Dear Aunt Bossy,
My week has been ruined by daylight saving time. It isn’t just a matter of the sleeping hours, since I don’t go to bed and get up on a schedule. It is a matter of the light being WRONG all day.
I swear, I’m not nuts. It just throws me off. I have the same problem when I visit places at the edge of a time zone and the light doesn’t match the hour.
Any suggestions?.
Agnes
Dear Agnes,
Yes, read the letter above and consider some real problems. If it helps, know that I don’t like it either.
Best, Aunt Bossy
Aunt Bossy is Susan Murphy, an internationally known Communication Skills Coach who adores spending every winter and spring in Beaufort. Ask for advice at bossymurph@mac.com
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