There was recently a discussion in the Fragile X email group about a mother of a little boy with Fragile X who had attended a neighborhood party where someone had used the R word, and she was upset and had to leave the room for a moment. She wasn't sure what to do about it. What to say. I probably would have done the same thing.
I also recently saw an offensive You Tube video posted on Facebook, by someone I used to work with. No one I know closely. I don't think this person even knows about my kids, or reads this blog. (I imagine she/he will tell me if I'm wrong, though.)
I'm not going to post a link to it because I don't want to give this video any airtime at all. I don't want a single person to get to it from my blog. There will be no direct connection. But you can find it on You Tube if you want to. It's called "Retard Celebrates House Fire" and it's a guy on a stretcher, obviously mentally disabled, acting crazy, like he's happy about the burning house behind him.
If you MUST see what I'm talking about, go to You Tube and search for it, but don't watch it. Don't give it one more viewing.
I was incredibly uncomforable when I saw it.
I'm also uncomfortable with my status as "that girl,"now. The one you have to be careful what you say in front of.
I want to be the one you can be free and easy with. I want us all to laugh about the fact that I just called myself "free and easy." I want to be the one you can tell the dirty, off-color, political, offensive joke to.
I also don't want to hear the R word. But I don't want to be that girl who ends the party and the good times because someone said it, either. I don't like the word. It's a damned awful way to describe someone, no matter what the circumstance. (I cuss to denote the seriousness.)
And every possible alternative to the R word is a terrible, cruel, devastating way to describe a human being. None of them should be used. In fact, you are all forbidden to use them in my or my children's presence. You are just going to have to be creative and clever and come up with some other adjectives.
I think we've gone past the stage where the boys are small enough to get away with acting strangely. They are big 6-year-old kids now, and other kids are going to expect them to behave and respond the same way every other kid does. I got to talk to their kindergarten class this year about how they are somewhat different and yet how they are the same as other kids, and to suggest ways to interact with them - i.e., high fives and just saying "hi."
Random kids at the park won't have had the benefit of my talk, though.
So, what I need to do is work on my comeback. What am I going to say if someone uses the R word in my presence? Because unfortunately, most people don't live by my rules - it's going to happen. It's one thing if someone just happens to let it out in general conversation around me -- that's less personal, but no less painful. I need a comeback for that situation.
I also need a good comeback for kids, though, who are using it peronally against us. I don't want to fly off the handle, but it's going to make me hot if some kid says something derogatory about my sons.
What should I say if sometime this summer while we are at the park, some little (or not so little) kid calls one of my boys retarded? Without making the gap between my boys and other children even wider? Because nothing says "I'm different from you" more than a mom hovering within a few feet her kids while they climb, swing, and slide.
Yeah, I don't usually sit on the bench with the other moms. I follow my boys around like a stalker. I want them to have the space to play and be themselves, but at the same time, I need to be right there if their interactions with other kids don't go smoothly. Sometimes other little kids make them anxious.
And what should I tell Aliza to say? I want her to have the right response, too. It's so much harder for her. She has to worry about her brothers and then worry about her own place in children's society too.
I'm going to be thinking about it, and I'm open to your suggestions.
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