I was visiting with a dietician today about Ralph and his eating habits. She was a friendly, well intentioned person so I chose not to correct her when she told me that she could tell that Ralph was "high functioning" because of his mild Down Syndrome facial features. I found it very hard to focus on our conversation after that.
First of all, this is totally not true. Secondly, he's two. Sure, I think he's as smart as a whip, but just like any child of two, his potential is unknown. Thirdly, just who do you think you are, anyway?
I'm a little bent out of shape so I'll need to vent for a minute. For those of you who are unsure of what to say to someone who has a child with Down Syndrome, take note. (Just for the record, I'm not known for always saying the right thing.)
Do not use the word or any variation of the word mongoloid. This is archaic and racist. 'Nuff said?
Do not tell me how happy and loving people with Down Syndrome are. This is a sweeping generalization that takes away a slice of their humanity. Human beings display a wide range of emotions. People with Down Syndrome are human beings.
Do not talk about how high/low functioning my child is. I have a very bright eight year old who cannot tie his shoes. He's great at math facts. I guess function level depends on the task at hand.
Don't tell me I'm a saint or how you "don't know how I do it." That is insulting to me. If not everyone can be saintly, like me supposedly, then perhaps killing an unborn baby with Down Syndrome can be justified. I'm just a mom doing her best to raise her children. You'd be surprised (shocked?) at how unsaintly I can be. You'd be surprised at what you could do if it was required of you.
Whew! I feel better now.
8 comments:
I hear you! I get tired of people saying "how loving they are". And I get the same comment a lot of "I don't know how you do it?" I finally started telling people "If it was your child, what would you do?" The best you can!!
Good PSA! I too would of been glazed over after a conversation starter like that!
Now that you feel better, pleeease plan your answer for the next time. Rehearse it if it helps.
Your glazed response allows this woman to continue in her poor understanding of people with DS.
There's no saint-title before my name either, but I really try to muster something....like...Oh. The latest research is that facial features have nothing to do with functional level.
Really no more need to be said than that - she - or the next person will be dumbfounded and if they are a professional, likely go do some reading or reflecting on your response.
Another option....Do you have children? How many? (Most people who do not have children are particularly socially impaired for referring to other's children.)
Redirecting to her - you also give a message of the personal if not incorrect line of her comments.
Now, did she help you with Ralph's diet? Love you, Stephanie.
Barbara
Barbara,
I feel so bad! I'm just not quick on my feet. I was so shocked by what she said that I was struck dumb. Kinda like the time an acquaintance said mongoloid to my face. I'm not a very good advocate. :(
We all do the best we can, Stephanie, including the clumsy dietitian. She probably thought she was complimenting you and Ralph.
That's why it is useful to plan ahead. Let that one go. Barbara
Awesome post and spot on!
Well said! I'm always stunned when "professionals" say things that are sooooo inappropriate. Like when Kayla's pediatrician asked if I was sure she had autism or if she was just "really mentally retarded." I think my eyes bugged out of my head when he said that!!
Great post. I too fall in the dumbfounded category when stuff like that happens especially because I realize that most people are well-intentioned when they say stupid things. Planning ahead is a good idea.
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