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Friday, March 20, 2009

Opinions needed

First I have to show you this picture. This is sweet little Dillon. He had his g-tube placed this week, and he made sure his blankie was by his side. Soo sweet, I love it and I have been bombed with new requests, its awsome, it means the word is getting out. I've had to get a couple of other people to help for a while.

Ok, I need everyones opinion. A friend the other day said that a mom of a DS child told her that some people get offended when other people call them downs. Does this offend any DS moms? I say downs all the time, its just my way of shortening down syndrome when I'm in a hurry, kind of like DS. It doesn't bother me at all and I don't think there is anything derogetory about it. What do you think? I want to know because if people don't like it, I will stop using it. But then what about DS? Is that ok?
Oh we can never win sometimes, I guess whatever we say may offend someone out there.

20 comments:

  1. OMGosh no...I may have said DOWNS before, but I usualy say DOWN SYNDROME. Why should that bother me, it's not insulting in anyway to me. When I think of "downs" I think of the entire reason why the name came about...the reason that the condition is called DOWN SYNDROME is because the "founder's" last name was Downs.(at least that's what I remember the MD telling me)...SO, it's not insulting to me...it's a condition/dx. That's just my input.
    AWWE..MY sweet baby boy is so cute...That blanky ROCKS!

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  2. I think there is always someone who is going to be offended. With my little one I use shortened terms for his issues, I will say he has micro, cp, etc. I look at it as just a description.

    That blanket is adorable along with the sweet little guy snuggling with it.

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  3. I prefer Down syndrome or DS. Downs just sounds antiquated, which I suppose I associate with outdated and inaccurate information. What I find to be annoying is "Downs kids."
    ---Jen

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  4. It doesn't bother me at all. I don't really care what people call it because to me, Grace is just Grace, her Down syndrome is part of who she is but it does not define her. She has her own personality, likes, dislikes, abilities, etc. Does that make sense? And I love the cute blankets! How do you find the time? My good friend just found out that her 4 month old has SMA (Spinal Muscular Dystrophy) and the average life span is 18months. My heart is breaking. Such sweet kids (and families) that have to deal with so much. I really admire you Lacey for doing this blankie program. I am sure it means so much to the recipients. Keep up the good work!

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  5. Ok, I'm a dork, what does antiquated mean? I didn't know it was outdated because it is down syndrome by a man named Downs, like Melissa said.

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  6. I was just talking about this today with my friend so how I ironic you bring it up. It really doesn't bother me either way. The NDSS site has a section regarding proper Down syndrome language and says never call a child a "Down's child". I feel that people that may say this really aren't being mean so I don't take offense to it.

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  7. I meant that my friends daughter has Spinal Muscular Atrophy...not dystrophy. Just wanted to clarify.

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  8. SO here's my thing. I will say, "She has Down syndrome" or "She has Downs" or "She has Ds" "She's a child with Down syndrome". None of those bother me.

    Here's what drives me nuts:
    "She's a downs" "She IS downs" "She is down syndromed" "She is a downie" "She's a down syndrome child".

    People first language! Beyond that, use whatever form you'd like... except mongoloid. Don't ever use that. Yuck.

    Sorry you asked?! LOL

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  9. Don't you think there is enough in this world, in our daily lives to deal with, worry about, stress about,and pray over that now we have to worry about how we all refer to our children, children that we love so much, or other's children, who are so similiar to our own children. There are children fighting for their lives, with Down Syndrome or not, fighting cancer battles, people losing thier homes, or jobs and someone is worried about what you call a very special Syndrome that a man named Dr. Downs disovered. My goodness girl...if people know you, they would know you would NEVER use that word in any sort of offensive way, and then for those that don't know you...you can't please everyone. You keep doing what you do best...serving and loving people..the rest will get their priorities in order one of these days! Much love dear friend!

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  10. Actually, The the name of the doctor was Dr. John Langdon Down. Not Downs. When he first described the syndrome, people refered to it as Down's syndrome, as in, it was his syndrome. Then it changed to Downs as people left out the apostrophe, and as other sydromes became evident, like Edwards syndrome (Trisomy 18), the same terminology was used. For some reason, advocates decided they didn't want the syndrome to be "owned" so to speak by Down, and it was changed from Down's to Down sydnrome. Incidently, T18 is still called Edward's syndrome. I don't get upset either way, Down or Downs. And I agree with what everyone else has said previously. I don't like to hear "that Downs child."

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  11. The only time I get annoyed is actually when my own pediatrician says "downs kids" I don't know what it is, but it does get me! Maybe b/c he is signaling them out. Jonathon is Jonathon and he is just another one of MY boys!

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  12. You know Lacey,I am with Michelle ... I know your heart and you, and I can't believe,or maybe I can,that someone would be offended by you using it in that manner.Anyway,don't sweat it... just my opinion.

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  13. It doesn't bother me, I know it does others but I don't really think of it as negative.

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  14. I wouldn't take it to heart as offense. I try every single day to use people first language. Reducing my child to "a down's kid" is really an abuse of the English language. :)

    Dr. Down did not own DS therefore it can't have the apostrophe of possession.

    Larkin is not a "down child", "down syndrome kid", or anything else remotely close.

    She is Larkin. She is a girl. She is a child. She is our daughter. She is your friend. She is many things before her diagnosis comes into play.

    People wouldn't call her "seizure kid" so why refer to her by DS?

    I learned a very quick lesson a few years ago when I referred to a child as "wheelchair bound" and the mother (a friend) gently told me "my child isn't bound to anything, he USES a chair" and I realized what I had said. Even if it is insignificant to some - I would hurt someone by using an antiquated term.

    People first language is always best. Yes there might be more important things to worry about but human dignity is first.

    I think you rock, your heart is amazing, and you do awesome things with your life. Don't sweat the small stuff.

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  15. Thanks for the clarification Maureen. I just didn't want to get into it all to be honest!

    Happy DOWN Syndrome Day everyone;)

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  16. Okay Lacey asked me on the phone, since I was the mom that was chewed out for the for the use of the term 'is Downs'. Here it is. My Arianna 'is' Trisomy 13. The word has implies to me that it is a possesion that I could give away if I wanted to. I can not give back that extra chromosone, nor would I want to, it makes her the wonderful and special Arianna that she 'is'. Without her third 13 I would have never been apart of such a rewarding life and friendship that I have.
    This is my feeling on the subject.
    My daughter is Arianna, and she is Trisomy 13. We are proud of it.
    Julianna

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  17. Being in the position I'm in and going to all the conferences, people first language has been drilled into my head! Lily is my daughter first and then she has Down syndrome. Over the years I have been taught that it is Down syndrome with no 's and syndrome is not capitalized. John Langdon Down found the syndrome, but it's not his, so no 's. Although in European countries they still use the 's.
    I always try to put the person first with the disability after. I have heard downs, and don't get offended, what gets me is downie, and the thought of the Asian countries still using the word mogoloid drives me batty!

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  18. I say it all the time girlie. I have lots of friends with kiddos with Downs and it doesn't bother them one bit....In fact my friends and I think it sounds cute ;0)

    Trina and Jophie

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  19. How funny...I was just going over this in my head this afternoon. I call my daughter and her buddies with Down syndrome "downsies". I figure i don't refer to angels as "spirits with angelic empowerment". So, I don't feel as obligated to always say "children with Down syndrome". I don't feel wrong in identifying them by their Down syndrome since, frankly, they wouldn't have made it into our social circle without it!
    The only references that ruffle me a bit are "other kids like HER" or "those kids"...I suppose I don't mind someone coming out and acknowledging the fact that she has Down syndrome and am far more bothered by them speaking around the fact, as if she has something to be ashamed of.
    Such an interesting question!

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  20. Oh, and I can't believe I forgot to tell you how great your blankies are! If I attempted something like that it would have to involve a stapler and duct tape. Such an artist!

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