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Post by didmyheartgood on Jun 7, 2004 22:07:14 GMT -5
I am asking all moms,
Have you ever had your feelings hurt over a comment made about/in reference to your child with DS? Who made the remark? What di they say? And how did you respond?
I had my feelings hurt today while in a store with Brace. Brace is too big to sit in the seat part of a buggy, so I tried to get him to sit in the back part. He refused, so I gave him the benefit of the doubt and let him walk with me. (I didn't have his twin brother with me, so I thought it would be a good opportunity to teach Brace to stay close) Well, Brace ran off, picked up everything he could find and tried to lick things(I stopped that in time)He just wanted to run wild, so I put him in the buggy and told him it "wasn't a choice". We were running short on time, so I know my frustration level was higher than normal too. Anyway, these 2 women that worked there found great entertainment in watching me struggle to keep Brace in the buggy, listening to him HOWL and me try to pay for my items. One made the comment about "who is the mom and who is the child?" I ignored her and continued to check out. One of the ladies came over to get a "better" look at Brace and said "Oh well, I see why he is having so many problems." I was fuming! I told her she needed to learn some manners and left. I didn't say what I was thinking because I didn't want Brace to share his 'New" words he learned from me in speech.
I had one other time that a RN called Brace a "mongoloid" to my face. I cried for hours over that one., then I got mad. The next time that I saw her at our ENT clinic, I made sure she would never be in charge of Brace's care again. I told her if her terminology was any reflection of her education, then I wanted another nurse caring for Brace.
Am I the only one that runs into the rude, ignorant people? I am sure I am not, but sometimes it sure feels like it. You would think after 4 years of being Brace's mom, I wouldn't be so sensitive, but I am.
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Post by meghans_mom on Jun 7, 2004 22:30:16 GMT -5
HI there...
I can't believe how ignorant some people are...I haven't *yet* (cause I'm sure it's coming) experienced anything really badly yet but am not looking forward to it because I don't handle things like that really well. I think if I had had been in a situation like you were in today I would have looked for a manager and complained...or if short of time, called or wrote a letter of complaint (including names of the offenders if possible). I'm just sorry that you had to be put through that at all....I mean, what is WRONG with people??? I have had my feelings hurt though...family members and friends who unthinkingly still use the "r' word around me. That I hate, and never know how to respond...although I am going to try and remember to use Michelle Mc's "ouch" comment. The worst thing I think I've heard so far..although it was made in the right vein - but I found it offensive - when i was pregnant with meghan and found out about her DS I was on a pregnancy bulletin board. one of the girls there said, well it won't be so bad, when she's older you can give her plastic surgery so she'll atleast look normal. And another time, again while pregnant...I *briefly* looked into adoption and found there was a large waiting list of families looking to adopt a child with DS. Not one but several family members said to me...why on earth would anyone want to adopt a child like that . Well, excuse me...that child is MINE! I didnt know what to say either time. But enough about me...I'm just sorry that we and our children have to deal with things like that. I try to look at it as we're representatives and can help maybe teach and change people's outlooks but it's never that easy. I'm too shy and non-confrontational....I hope that I won't have to deal with these things but I know that someday I will. It's just hard to know before hand how to handle it. Hugs to you and Brace! laurie
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Post by Staci on Jun 7, 2004 22:40:57 GMT -5
Aw, man! Hugs to you and Brace! You need it after your encounter with the oh so lovely ladies at the store. Geesh! I would be fuming, too! Aidan has some behavior stuff that we're working on. He throws massive fits in public places...and I'm never sure how to handle them. Usually, I just try to take him out of the situation...but, like in your case, sometimes that isn't possible and you NEED to get your stuff done. I know how that goes. I don't remember anyone actually SAYING anything rude to me, although it probably has happened, I just am one to conveniently forget (it's how I cope! LOL)...but I've had my share of stares...and it isn't fun...it's actually very uncomfortable! I want to SCREAM at people sometimes...that if they lived a day in my shoes...they would totally understand! People are just rude...they don't understand what's going on or why. I know if I had the same run in as you did with Brace today, I probably would have said a few...uhhmmm...words. You must have a great deal of patience! I wasn't of much help...unfortunately, run ins with ignorant people will probably toughen you up to all of the stupid comments. I'm sure it will me, too! Hang in there...and forget those nasty mean women! What do they know! Hugs, Staci And Good For You for telling that nurse what for! Arrrghhh!
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Post by Claire on Jun 7, 2004 23:10:16 GMT -5
Hugs to both of you. I've been there a couple of times. One time when Adam was about 2 was the worst one and of course we never forget these things. We we're at the doctors office waiting for our appointment. Adam was not yet sitting so I always brought a small blanket for him to lay on in case he got tired of sitting on me. Well he had this little habit of screeching loud and wiggling his arms around when he was happy. ( Like he was having a seizure or something) This little boy I would say was around 3, came over beside Adam. Of course Adam was happy, so he started to screech and wiggle his arms around. This mom got up and told her son "You come and sit with me now" in a rough voice. Being the way I am I just thought she may have been worried that her son may hurt Adam. So I told her I would keep and eye on them. She said she prefered her son stayed near her. A few minutes later (while this lady was at the receptionist desk) the little boy came back and of course Adam, let out this screech again. well she came over, grabbed her son by the arm and pulled him on her hip and said "You don't play with people like that). I was so shocked and all choked up ready to start crying at any minute. My face must have changed different colors in an instant. Everyone in the office turned to me like to say "Slap that woman" Instead I pulled Adam up on my lap, walked over to the lady (who was still at the receptionist desk) and asked if she had an appointment for her son that day. She said yes, so I told her to have him checked for chromosome abnormalities as DS was extremely contagious, and then walked away. Everyone in the room started to laugh including the neurse. But the tears got the better of me and the nurse brouhgt me into the office and talked to me. I didn't want to react too bad as I had my 3 year old daughter with us and did not want to teach her to just go and slap whoever would be rude to her brother. The next week I went to the Post Office and guess who was there, the same lady with the little boy. I didn't have any of the kids with me so I had to get my revenge. I approached her and simply said " Ya it looks like the DS profiles are starting to show, good thing you had him checked" May have been mean on my part but I could not resist. Revenge was sweet. To this day if this lady sees me on the street she will cross to the other side. I find now that Adam is 6 we don't get so much of it as he is the only child with DS in our communitty, and I guess people all know who he is, and are usually very good about it. Everyone in town knows Adam, but not necessarely know me. That's good. Try to always remember the good things, I do even though I forgive some things I don't forget.
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Post by christie on Jun 7, 2004 23:43:13 GMT -5
HUGS to you, I think all of us have or will experience such things at one time or another. Being Chris is 11, alls I can share, is in time it get easier to laugh off such silliy comments.
CC
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Post by jordansmom on Jun 8, 2004 0:31:17 GMT -5
One of the things that bothers me is that in addition to Jordan, I have a 4 year old and an (almost)3 year old. They are LOUD and BUSY all of the time. And if we are all standing in the check out line and my younger kids are acting up, who gets stared at? Jordan, that's right. And to make it worse, she LOVES to wave and tell people hi. They often times turn their head. And she keeps waving, won't stop until they either wave back or we walk out of the store. I just want to lock my kids in the car and then go back into the store to "settle things"...
I am so sorry that this happened to you...it does get a little easier, I used to fly off the handle for every little thing. Progress!
Angie
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Post by cindylou on Jun 8, 2004 0:43:43 GMT -5
Guys--where do you all live?? I'm in Oregon--and I have to say that Kaylee is 11 and I can only remember 1 instance when a little boy said something about her looking funny...but he was like 4 years old and Kaylee was 5 or so at the time...he just knew she looked a little different...(though she's a beautiful girl.. .) ;D) I told him "she might look different then you--but she doesn't look funny.." I did have one couple stop in front of our house to ask directions and they noticed Kaylee and asked if she had Ds and I said yes - the (older) woman said "it's so neat that they have a cure for that now!" people just crack me up...but I swear it seems worse on the east coast..are you all on the east coast??? Move to the NW! ;D People are usually really sweet to Kaylee around here!
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Post by cindylou on Jun 8, 2004 0:45:29 GMT -5
and BTW -- someone tell me what Michelles "ouch" comment is all about ...is that what she says when someone uses the "R" word??
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Post by meghans_mom on Jun 8, 2004 7:06:24 GMT -5
Cindy - yes, there was a discussion about that word a few weeks back and a few people said (me included) we don't know how to handle it when people we know use that word, out of context - and Michelle (I'm pretty sure it was her) said she simply looks at the person and says "ouch"...which I think is a pretty good way of getting your point across without being too confrontational. laurie
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Post by Emilysmom on Jun 8, 2004 7:48:03 GMT -5
When I first read this post, I immediately wanted to post YES!! I've had my feelings hurt many times!! But when I started to post about the various instances, I seem to have forgotten most of them. I'm guessing it is because Emily is nearly 13 years old, and most of the comments that caught me off guard were quite a few years ago. I think it really does get easier!! (either that, or I'm getting so old I simply cannot remember them). The one comment that sticks out in my mind that still hurts me today was from another mom of a child with Ds. Her daughter was about 6 months old and Emily was about 3. We had the same early intervention case manager, and she kept telling this mom that she just HAD to meet Emily........she raved on and on about how well Emily was doing, etc. We went to visit them, and took Em with us. The visit seemed to go so well! Emily (at least in my UNbiased opinion) was totally charming!! A few weeks later, I got a phone call from this mother asking my opinion about a specific doctor. As we were talking, she said that her husband had gone through some serious depression ever since we visited them and that he was very disappointed after meeting Emily to see what was ahead of them. I was totally speechless for what felt like an hour.....then I finally said "you know, even if my husband FELT that way.....there is no possible way I'd share that with the mother of the child who caused his depression". We hung up shortly after that, and I've never forgotten it. We have seen each other quite a few times since then, and I've had a twinge of hurt every single time. Any rude comments made by strangers are easier to handle than this one by someone who truly should have known better. Hang in there........I do think it gets easier! Susan
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Post by adisonsmom on Jun 8, 2004 9:39:37 GMT -5
Well... I haven't had much time to be hurt by too many comments. Being that Addy is still only 6 months old, we just get comments like oh, a baby!!! and then they look into her carrier and say "ooohhh". Well then I just say isn't she so cute, she really has changed my life for the better and usually they just walk away and I think how true it is that she is my little blessing from above.
I do have to say that the one thing that really hurt my feelings was right after she was born, I don't even remember who said it, I think a nurse at one of the clinics we went to (the first few months are still a blur of tests and different docs offices) anyway she just looked at us and said " I am so sorry" I looked at her because I thought she dropped something on the floor or farted or something LOL but Noooo she meant she was sorry about Addy. I LOST IT on the inside!!! Somehow calmly I said do you mean you are sorry about the baby? She said yes, how very sad. I said yes it is sad...that you will never know the kind of love I feel for her. We don't need your pity what we need is for you to work on being more educated and compassionate. Well she just walked out of the room, we had a different nurse after that. Now I feel kinda bad because she was just trying to be nice but I don't want anyone to pity me or apologize for my daughter. The first few hours of her life I wished that she had not been norn w/ DS, but then I realized without DS she would not be our Addy, this is who she was meant to be and I am glad God gave us this special gift. Hugs to all of you, and thank you for continuing to give 'em hell!!! And paving the way for our family!!
Lori
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Post by momofrussell on Jun 8, 2004 9:53:05 GMT -5
Well, I have to say, I have never had an experience like that. Russell is 6 and I have never heard a RUDE comment whispered or to my face. It's not to say someone might not have thought it, but no one has been rude yet. I am very sorry you had to experience that. Now.. like in my other post, I will say that asking and comments in general I enjoy and welcome... RUDENESS is never welcome, wether it be my 11 yr old, or a stranger.. in ANY subject, not just about my son w/DS. I where a sign on my head that says BACK OFF IF YOUR RUDE LMAO!!! I think everyone sees it except for my 11 yr old heehee! Ok.. on the MONGOLOID subject. It also doesn't bother me like most of you here and on other boards. I am sure you all know, but that was the term PRIOR to DS and I don't see it as BAD... It's JUST a term! The ONLY people who have used that in my presence are OLDER generation people and I am NOT about to correct an elder or get "bent" over it. THAT is how they learned it. Even if someone in our generation uses the term, it wouldn't bother me.. maybe I'd keep refering to DS if they were using Mongoloid. But it doens't get to me. My mother and I were JUST talking about the term , Mongoloid becuase it becomes a topic from time to time on the boards I go to. My mother is 63 and THAT is how SHE learned it too! Back when she was young, the term DS wasn't around. She say DS in her daily speech instead of Mongoloid now but really, if she didn't have a grandson with DS, MAYBE , just MAYBE, she might use the other term. Who knows. That is just my take! A.
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Post by shellk on Jun 8, 2004 10:12:31 GMT -5
I feel for you on this one and send loads of hugs to you and Brace...I have many that stick out in my mind that have hurt..and w/ Kourtney being 5 I still fly off the handle at times and that something that I know I need to work on my DH tells me sometimes I am just like a lioness and I always asked do you even understand...See, he works 6 days a week 15 hour days and doesn't have this problem ...I posted on the other one about "educating people".. I think what hurt me most was just about 2 months ago my husband took Kourtney to Home Depot with him..And when he got home I was wondering why he was still sitting inthe van with Kourtney..I looked out the front window to see him sitting with her one his lap in the front just holding her..So I waited for him to come in and when he did I noticed tha he had been crying...I asked if everything was ok and he just looked at me and sorta smiled...He said that when he was in the lumber isle that a guy walked up to him and asked how old Kourtney was (she was throwing a fit, which she does quite well) so DH says 4 and the guy looked at him and said.."I could never deal with a child like that retarded and a brat to boot." I am so proud of him for not decking the guy..I will say that I have had my feeling hurt more than once and have lost it more than once...But, what hurt the most was seeing my DH go thru it for the first time and seeing how mixed up and ticked off he was...But, I was proud when he told me that he told the guy. "This is my daughter and I am her father, I am a man and not "As@#$%^" like yourself." And he went about his business...But, cried like a baby he said as soon as he got into the van. I will say now he has a better understanding what I go thru sometimes and has told me that he loves me more than life knowing that this is not an easy road and he was soory for taking the things I would tell him the wrong way..
Michele
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Post by Jackie on Jun 8, 2004 10:46:22 GMT -5
I can truly say that no one has hurt my feelings...at least not to the point of me being able to remember except shortly after Em was born when one woman kept saying...I am soooooo sorry over and over again. I was so new back then that I had no comeback for her.
My feelings DO still get hurt from time to time...but mostly its of my own making. Emily is now 24 and my feelings (like tears in my eyes) sometimes come to the surface when I open up the Sunday paper and see wedding announcements of the girls who really were good friends to her in Elementary School and thru Camfire and Bluebirds. While I am so extraordinarily proud of Emily and how far she has come...these moments remind me of the vast difference in the lives of these young women and their families from ours....not that they are any better lives...just how different in some ways they are. Then of course the little voice inside of me says..."but Jackie...how blessed you are with Emily...and look at what all she is doing and has done". That voice is right....she has had as many if not more life experiences than many of the young women around here and now here she is off almost 1000 miles from home...working and trying her wings!!!
Those comments DO hurt ....and there doesnt seem to be a universal comment to fire back....unfortunately the world will always have ignorant people in it....but I think if we maintain our dignity and dont fire back ugly things ourselves in anger...we make more inroads to understanding and acceptance (not sure tho how I would handle some of these situations you all have described...I have to work very hard to think before I respond...LOL).
This is a good thread because sometimes it helps with the hurt you have experienced to just share it...and know you are not alone in this.
Jackie
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Post by Alice on Jun 8, 2004 10:53:16 GMT -5
For the past 4 years I learn how NOT to pay attention to what IDIOTS may say about all of us (I mean my family). We were fortune that no one ever did any bad comment on our Luke. But if it happens, I am not sure if I will stay calm and not say back something offensive. I understand that your feelings hurt and I am sending my hug to you. Alice
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