Sunday, November 29, 2009

This is just me...venting...

I've learned a lot since I found out about Alexis's Down Syndrome, did my research and read other parent's blogs. For example, I am to refer to my child as "my child who has Down Syndrome", not, "my Down Syndrome child." I understand the point that my child is not Down Syndrome, it's just something she happens to have. It's amazing to me though, how some people react to the wrong terminology. I'm a little afraid to be around some parents in fear that if I slip up (and I do slip up), I'll be scolded.

I read once about a parent getting angry because someone said that children with Down Syndrome are always happy. I realize that a person shouldn't generalize. I realize that obviously no one is always happy. But get mad about this statement? People tell me often that my boys are always happy. I don't get mad about that. Why would I get mad if someone told me that Alexis is always happy? Down Syndrome or not, she is almost always a happy baby! Everyone should be so lucky.

And, going back to the topic of my boys, I have also learned that I am not to refer to them as my normal children. They are supposed to be called "typical". I looked up the words in my thesaurus. Hmmmmm. Same thing. Apparently, by calling the boys normal, I'm implying that Alexis isn't normal. So I guess it's okay if she isn't typical, but it's bad if she isn't normal. Even if normal = typical? Seriously? (And I don't call them normal anyway, because they're not. Normal 4 and 6 year olds don't sit in their bedroom playing quietly together for over 5 hours!!! Yes, I had to go keep checking on them today to make sure they were still there. My kids aren't normal. But I'll try to make sure not to use that word anyway.)

(Note: I DO agree, and most everyone across the board that I've ever met agrees, that the "R" word is off limits. Bad word. But while I've never used the word, I'll admit that back in the day I made my share of "short bus" jokes and am ashamed. So I can't throw stones. But I can let people know here that the "R" word is a bad word.)

I'm not writing this to get people up in arms. I'm venting. Forgive me. This is just my opinion. But I become quite frustrated sometimes because it seems there are so many "guidelines" one has to follow to make sure to never offend. I read today where a mom said she didn't like the word "disability". I've heard of people who would rather describe a person as "differently abled," as opposed to "disabled". I'll probably screw that up. And more than that (because I realize that some of these guidelines are important) I become frustrated in the way people react when they disagree with how something is said. My point I guess, is that we get so carried away with what is acceptable and what isn't, even with the best of intentions, that the main thing that this has accomplished with me is that I now hesitate to get involved in the down syndrome community (or is that "the community of people who happen to have down syndrome"?). I fear that I will put my foot in my mouth or else become humiliated in public when I am scolded for ticking someone off when I accidentally use a word that they don't approve of.

But now I'm done. And for Alexis's sake, I'll suck it up because being involved is what's best for her. But if I ever meet you in the future and accidentally let a word or phrase slip that you don't approve of, please know that once it slips, I will probably be fully aware of my goof and embarrassed enough without anyone pointing it out.

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