AKA Meritt makes a very good point.... here is the comment
*I smile at the comment - but it also brings up a good point. Because everyone is different, there is never a right or wrong way to act, thing to say, not say, look, not look, etc. It's tough on people - because I would have thought a nice smile would have been ok. I wouldn't know that would upset anyone! And while "what's wrong with her" is rude, a nicer phrased question I would think would be ok because it gives you a chance to answer well-meaning questions. They aren't being mean or unkind... just curious.
I was just reading a blog last week that someone has one child and got a new puppy - and a comment (made in jest) was "oh, so you got your child a puppy instead of a new brother or sister!" :) Meant I'm sure just as a funny greeting from their neighbor but this blogger was MORE THAN LIVID about it. Really - ranting! I was floored. Seemed like a funny 'greeting' from one neighbor to another about getting a new puppy for their 3/4 year old (which is typically the time people bring a second child into the family anyway). I don't think the person was rude in any way shape or form but that blogger was ready to kill them for saying it.
So again... the comments, jokes, questions and such from people are so difficult to judge as everyone reacts so differently. *
I just have to comment on the comment.
I admit it is incredibly hard to please me! Plain as that. When I say I don't like smiles, it isn't the genuine, look at that cute kid, smile. Those I smile back at. It is the pat you on your back, you poor thing smile. I hate pity. And I don't mind questions about Lily when it is appropiate. Hearing what is WRONG with her chills me to my bone and after I say "what is WRONG with her??" Then I say "absolutley nothing". But when I am sitting with Lily while Andi plays at the mall play area and a mom says, "I am sorry but my daughter is asking why your daughter is in a wheelchair, what can I tell her" I say to the little girl that Lily's brain doesn't tell her legs to walk like yours does. And that is good enough for her. I also mention although she can't talk she can hear and loves to hear other kids voices. Then the kids are happy to talk to Lily. Kids are easy. I will answer a kids question any day. It is the adults I question.
I hope you can see the difference. And I 100% understand that I am a difficult person to please. Catch me on a day that I am in no mood to talk to anyone about the weather and I can freak out about nothing. Another day I will answer anything anyone asks. I guess I just want Lily to not feel strange or different. I don't know all that Lily understands and questions that question her like she isn't even there really get under my skin.
I really shouldn't say smiles bother me, b/c they really don't. I just don't like the pity looks.
Just the other day a woman put her arm on me and said "God bless you" I said, "ok" a little weirded out, but then she contiued. She had a grandson with Angelman's and she knows what her son and daughter in law go thru and just wanted to say "God bless". Then I felt like she was in my club, my gang and I welcomed her. I guess had she stopped short with the "God bless", I would have thought she were strange.
Maybe it is because I never belonged to a group in my teen years I am feeling a bit stingy in who I let talk to me, the way they talk to me. It isn't right, it isn't fair, but then again neither is life.
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Still confused. LOL.
See... the God Bless You in and of itself sounds fine to me, but had she not continued you probably would have saw it as a "pity" comment and gotten upset!
I have just accepted that because everyone is different - views things different, takes things differently and has very very different sense of humor, etc. you will never ever know what to say or do.
However, I did consider last night that perhaps you get angry at the looks or comments because it's been a couple years and you are tired of them.
It's like the pregnant ladies that are 8 or 9 months along and someone says "When are you due?" And the pregnant lady almost rolls her eyes, and sighs and then answers "not for 6 weeks!" because she is so sick of that question.
*** But yet when she was 5 months pregnant and someone asked, she grinned and answered with a smile, because it was still new.
Most people won't ask or make comments to be mean, but just because they care. If they weren't curious, they wouldn't care. So it's rather a compliment to humanity that they care to comment or look or ask, even if it's in a way that you are tired of or consider rude like "What's wrong with your daughter?". Yeah, it's a little rude, but then again, maybe they didn't think so based on where they live, how they were raised, their culture or just because their personality is very 'open and honest' and they didn't see anything wrong with asking that way.
(One of my best friends has a child with Prader Willie Syndrome so we've had similar conversations). She says she hates the questions in part because she's had to answer them so many times in the last 12 years and she knows she'll be asked for the rest of her childs life... and she is just tired of the question.
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