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Post by Radonna on Feb 27, 2006 21:29:46 GMT -5
Jeff, I am sorry you feel like we don't appriciate your contribution to the world of Down syndrome. I think that your input on certain issues is valuable. However I think that you should be smart enough to realize subjects like these are ones that you should just avoid posting on because you KNOW how we will respond. We ARE Momma Bears. Nothing you post is going to change our nature, so just let it go. Let people that need other people to understand post and find that understanding. If you have a problem with it SORRY. This really doesn't affect YOU, since YOU are not bothered by petty things like emotions. Radonna
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Post by hidyperson on Feb 27, 2006 21:39:09 GMT -5
Why do you have to go from something that makes sense to me -like really stay out it - being mean. " since YOU are not bothered by petty things like emotions. " Since I have no emotions, I can't be having hurt feelings.
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Post by Radonna on Feb 27, 2006 21:42:36 GMT -5
I meant toward this ISSUE sorry for not clarifying
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Post by Debbie on Feb 27, 2006 23:03:09 GMT -5
I know who you are Jeff. You probably know who I am by now if not, you will. I will not add anything to this since it is between you and the others. That would just make it worse and prolong it. Besides, I am not the type that would get involved anyway. I can be one of those sensitive types. I hope everything is okay with you and your family. I haven't been on NADS in quite a while. I wonder what is happening on there. How is she? I am sorry, I forgot your roommate's name.
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Post by hidyperson on Feb 27, 2006 23:12:34 GMT -5
Hey Debbie - good to hear from you. My roommate is doing great, we went shopping earlier and got her a new winter coat she's really excited about. Then there's the party she's off to this Saturday night, a whirlwind of fun. The whole family's doing well, but very busy. Thanks for saying hi. Hope everything's good with you too - Jeff
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Post by Alice on Feb 28, 2006 11:59:35 GMT -5
Jodi, As we (parents who are having kids with DS) are very sensitive and emotional to the stupid things some people (ignorant and stupid themselves) can say, my advice is: please try to stay far away from that stupid/ignorant people. Hope they would stay away from us as well! Hugs, Alice
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Post by laurasnowbird on Feb 28, 2006 18:52:08 GMT -5
Jeff,
I think you mean well, but there is a sarcastic edge to your posts that is hard to take from someone who hasn't been in our shoes. I'm sure that is just the way you communicate, and although it is sometimes amusing, it doesn't feel quite right.
Are we touchy where our kids are concerned? You bet. Was I one of the people who didn't "get it" before? Maybe. HOWEVER, even when I didn't get it, I would NEVER have said something as insensitive as Jodi's neighbor's crack about "no extra chromosomes".
People can just be STUPID sometimes, and I never had any idea just how stupid until Ethan was born. Ethan had a heart defect at birth that we were concerned about because it might mean that he would need heart surgery. I shared this with an acquaintance who asked about him, and explained that if he needed the surgery it was necessary to his survival. With a straight face, she asked, "So, if they decide he needs the surgery, are you going to consent to have it done?"
UMMMM, HELLOOOO! Can you imagine my shock? I literally didn't know what to say. As if I would even CONSIDER declining the surgery and letting him die. I just stared at her and said "Of course! We will do everything we can for him!" When I shared the encounter with one of my girlfriends who has a knack for snappy comebacks, she said, "You should have said, 'no, no heart surgery for Ethan. We're just going to have him put to sleep'".
Have you ever encountered any comment that callous, insensitive and cruel directed at your daughter? I'm not the only one here who has had encounters like that. Have you ever felt that you had to justify your child's right to BE? Many of us have.
You may be right. We may be thin-skinned. But quite frankly, we've come by our thin skins honestly.
Given the neighbor's prior comment, I most likely would have taken her recent comment in the same way that Jodi did.
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Post by wrblack on Mar 1, 2006 6:13:23 GMT -5
See, Jeff? Told ya I was right. People should learn to listen to me. Sheesh. 'Specially my wife. -- Bob
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Post by ALLISA on Mar 1, 2006 20:15:31 GMT -5
Laura....thank you for your very well thought out and articulated post....well said !! Allisa
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Post by cindylou on Mar 2, 2006 6:31:10 GMT -5
Gotta weigh in here-since I just had a screwdriver and its 3 in the morning and I can't sleep. I agree with Jeff--for the most part- that generally the people that I have run into in life with kids with ds are a bit 'over-sensitive'. I was tonight when Kaylee didn't get her trophy--but nobody in the room knew it ('cept Kaylee somehow--she's just too keyed into me emotionally). The thing that is always at the forefront of our minds is our kids, their acceptance, our need to advocate for them--how are they being mistreated. So a friendly neighbor might stop by my house--make an innocent remark that has nothing really to do with Kaylee's IQ level (not saying that is what happened to you Jodi--can't understand really what your neighbor was meaning..) but I can just choose to be offended. It's a matter of how we look at it. I just take the position of sometimes trying to educated the masses but mostly of just accepting people where they are. If they feel like every word they say is being scrutinized--I really believe it will LIMIT the amount of acceptance Kaylee has. I cannot relax and enjoy someones company if I myself am feeling evaluated and scrutinized--so I imagine others feel the same way. I actually tend to view ignorance as a bit of a handicap in itself. And give people room. Walk in grace...easier said then done I admit. Jodi--I am not trying to negate any of your feelings--your neighbor could be a bit of a whack job--but I guess what I'm saying is I would try to save my emotional energy for someone that really matters in my life... ;D Can't stand wasting it because i just don't have that much to go around... A ST once told me that my second born, Emma, was going to have bad speech because of Kaylee. (she doesn't at all--the most well spoken 10 year old I've ever met, and probabley because of Kaylee)People make ridiculous statements all the time. One couple once told me that there was a cure for Ds--and I had a child tell me when Kaylee was very young-"Why does her face look so funny?" Yes, these statements make me old, wrinkled and gray early--but they just stem from ignorance. I try to let it roll off me (it doesn't always) because I feel if I let the comments penetrate--I will be bogged down and old before my time. Remember though-Kaylee is 12 so I've lived through so many comments, looks, questions--I can't even begin to tell you--and I received advice early on to try (as much as possible) to roll with it baby. ;D Jeff-you gotta know we're mostly women here. We do tend to be a bit sensitive...and do want to feel free to vent.
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Post by TriciaF on Mar 5, 2006 18:55:41 GMT -5
Sheesh. I will repost something I posted long ago.
Hi friends, I just read a wonderful book; The Secret Life of Bees, by Sue Monk Kidd. I HIGHLY recommend it. But...what I came here to say, I found in an appendex to the book; a question and answer session with the author. Her answer relates to the book and the characters she created, but to ME, she could have been writing about Unomas and explaining why it has such awesome power and meaning for so many of us. I just had to share it. Here is the question and the response:
Question: How does having a sisterhood of women make a difference? Have you experienced such a community?
Answer:
Isak Dinesen, who wrote Out of Africa, once said, " All sorrows can be borne if we put them in a story or tell a story about them." Ever since I first read that line, I've carried it with me. When women bond together in a community in such a way that "sisterhood" is created, it gives them an accepting and intimate forum to tell their stories and have them heard and validated by others. The community not only helps to heal their circumstances, but encourages them to grow into their larger destiny. This is what happened to Lily. She found a sanctuary of women where she could tell her story, and have it heard and validated--an act that allowed her not only to bear her sorrow but transform it.
I have been part of several communities of women over the years. Each of them was created simply because we wanted a place to tell our deepest stories. In every case we found that there is a way of being together that sustains us and now and then, if we are lucky, returns us to ourselves.
Sue Monk Kidd
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Post by TriciaF on Mar 5, 2006 19:22:43 GMT -5
Now, I reposted the above because, as with anything else...its easy to get your panties in a wad over the way something hits you. Its easier to swallow....maybe she didn't mean what you thought....than....Don't you guys ever consider......which implies you're a bit thick to not consider. Words do have power and meaning and can be weird on the internet since we hear that 90% or so of communication is nonverbal.
There are so many variables that come into play in these situations that its exhausting to consider them all. Does someone saying something out of ignorance excuse them from considering the meaning/effect on the listener? Does it matter if something is said without malice or intent? Does it matter if they say the right thing when in fact they believe something else? Do we mince words or state our opinion? Do we use our speech to "win" a point or to express our feelings and thoughts? Do we want the truth if it hurts? Are there spiteful people who hold prejudices they will never yield? Yes, yes, maybe, sometimes....etc, etc, ad naseum.
In my experience, the general population's attitudes towards disabilities are often prejudices....good or bad. If you have the grace to give the benefit of doubt...and assume positive intent....thats the high road. If you can make a difference and educate and inspire...you are headed for sainthood. If you're having a crap day and have just suffered one too many fools and as a result, threw out every four letter word in your vocabulary, know you are human and in good company. I am all these things....and while I strive for sainthood, I reserve the god given right to b.i.t.c.h here at unomas to my friends whenever I feel like it...because I know they love me, warts and all. I don't really care if the woman's comments were taken out of context...if you feel bad, you feel bad. I love it when someone here shares how they handled a tricky situation in a great way, it gives me a chance to consider the alternatives and may stand me in good stead when in a similar situation. But, I also don't care if they handled it with less grace, that's life. We share here....that is the beauty of it. We tell our stories, the moments of our lives. We speak of the things that pull at our hearts....these are not trivial things. Do we hold prejudices ourselves? Probably, probably certainly. We are human, too. But, we are sustaining each other and are a part of something greater than ourselves and we are teaching and learning and are the better for it all.
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Post by Radonna on Mar 6, 2006 2:34:23 GMT -5
Tricia, I sure have missed you!! I am sitting right here in your Amen corner~ Preach it Sister!!
Missed you so much while I was offline! Hope to see you more often Radonna
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Post by cindylou on Mar 7, 2006 14:23:42 GMT -5
Hey- A big shout out to you Tricia- Always appreciate your perspective! Loved the illustration from secret life of bees. (loved the book actually). Only thing I would add is that this isn't an exclusive womens club -- Men abound-lurking too I'm sure- and I welcome their perspective as well--though it can be cold and harsh at times because they bring a lot of practicallity (is that a word) to the board as well as being able to handle things less emotionally. It's not better--it's just different - and I appreciate that men can operate that way. If my Scott were a bundle of emotions we wouldn't be as strong a team. Ya know? anyways-hey there-good to see you posting- I've been gone for EVER so I'm really out of the loop!
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