Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Do we post “what not to say” here, or is there another place? Sally From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Carol in IL Sent: Monday, October 06, 2008 9:45 AM To: DSIE Subject: [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families. Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog? Kathy and I will compile them all and then post them for the world to see. Carol in IL Mom to , 8 DS My problem is not how I look. It's how you see me. VOTE NOBAMA '08 Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Do we post “what not to say” here, or is there another place? Sally From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Carol in IL Sent: Monday, October 06, 2008 9:45 AM To: DSIE Subject: [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families. Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog? Kathy and I will compile them all and then post them for the world to see. Carol in IL Mom to , 8 DS My problem is not how I look. It's how you see me. VOTE NOBAMA '08 Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Post it here and then Kathy and I will post it to the blog.Say if you want your name attached or not.Course anyone can post comments at the blog! And that would be great!!Would love to see interchanges there as well. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ Listen to oldest dd's music http://www.myspace. com/vennamusic [DownSyndromeInfoEx change] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsbur ger.blogspot. com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families. Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog? Kathy and I will compile them all and then post them for the world to see. Carol in IL Mom to , 8 DS My problem is not how I look. It's how you see me. VOTE NOBAMA '08 Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 I know people don't mean it wrong or hurtful when they say it, but... I am just so tired of hearing, "God knew what he was doing when he gave you Hunter, because I just couldn't handle it". Like he SUCH a burden and we are just so good at carrying that burden... Sometimes when I've had a trying day and feel mean, LOL, I just look at them and don't say a word. Patty [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see.Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Patty, I know what you mean - people say that to me all the time. Not a saint of a mother.... Carolyn :-) http://stores.ebay.com/ck-antiques_W0QQsspagenameZL2222QQtZkm We've gone co-op! Come and see our newest location at Black Diamond Antiques in the Schuylkill Mall, Frackville, PA! 'Don't worry about the world coming to an end today.It's already tomorrow in Australia ' ( Schultz) -- Re: [DownSyndromeInfoExchange] What not to say... I know people don't mean it wrong or hurtful when they say it, but... I am just so tired of hearing, "God knew what he was doing when he gave you Hunter, because I just couldn't handle it". Like he SUCH a burden and we are just so good at carrying that burden... Sometimes when I've had a trying day and feel mean, LOL, I just look at them and don't say a word. Patty [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see.Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 I haven't heard it for awhile, but I've felt comfortable when people say......'they are so good in music.' (can't remember the exact quote) I'm a pianist and have a daughter (also piano) and son (drummer), so I always thought that if Josiah was good at music, he would come by it naturally. He doesn't have any more interest in music than typical children. He does like to listen to it. Shirley Mom to Josiah, 19 yo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 should have been "'never' felt comfortable." Re: [DownSyndromeInfoExchange] What not to say... I haven't heard it for awhile, but I've felt comfortable when people say......'they are so good in music.' (can't remember the exact quote) I'm a pianist and have a daughter (also piano) and son (drummer), so I always thought that if Josiah was good at music, he would come by it naturally. He doesn't have any more interest in music than typical children. He does like to listen to it. Shirley Mom to Josiah, 19 yo No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 270.7.5/1706 - Release Date: 10/3/2008 6:17 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Yeah, the one that gets me is when someone says, “God knew you were special, so he gave you Danny”… The people who have said that to me are the ones that I can imagine wiping their brow in relief that they are not special enough to have a kid w/Ds.;-/ The most bizarre comment I ever got was from someone who had a lot of cats…and they became really inbred, some of the kittens had eye problems or were missing a paw…and this person told me, “Now I know what it feels like to have a child with a disability.” I kid you not. It was all I could do not to laugh in her face. KathyR From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Patty Sent: Monday, October 06, 2008 2:15 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] What not to say... I know people don't mean it wrong or hurtful when they say it, but... I am just so tired of hearing, " God knew what he was doing when he gave you Hunter, because I just couldn't handle it " . Like he SUCH a burden and we are just so good at carrying that burden... Sometimes when I've had a trying day and feel mean, LOL, I just look at them and don't say a word. Patty ----- Original Message ----- From: Carol in IL To: DSIE Sent: Monday, October 06, 2008 11:44 AM Subject: [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families. Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog? Kathy and I will compile them all and then post them for the world to see. Carol in IL Mom to , 8 DS My problem is not how I look. It's how you see me. VOTE NOBAMA '08 Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 OH MY GOSH! What an idiot! Cats to KIDS!?! [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08 Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 My take is a little different, being as we adopted , but my two favs (NOT) are: 1. You will surely have a crown in heaven for taking in one of those kids. 2. You spent all that money to adopt and you chose HIM? Why?      Jules Romero If you don't stand behind our troops, please, feel free to stand in front of them! -- [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see.Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 You almost want to say, " Well, your parents kept YOU, didn't they? " Shari My take is a little different, being as we adopted , but my two favs (NOT) are: 1. You will surely have a crown in heaven for taking in one of those kids. 2. You spent all that money to adopt and you chose HIM? Why?      Jules Romero If you don't stand behind our troops, please, feel free to stand in front of them! -- [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families. Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Someone asked me if I had my "tubes tied" after I had Olivia. Wowaweewow......I had a hard time being GRACEFUL in answering THAT one! Carolyn http://stores.ebay.com/ck-antiques_W0QQsspagenameZL2222QQtZkm We've gone co-op! Come and see our newest location at Black Diamond Antiques in the Schuylkill Mall, Frackville, PA! 'Don't worry about the world coming to an end today.It's already tomorrow in Australia ' ( Schultz) -- [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see.Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008  After the doctor who delivered Josiah and finished up with me, he went over to the bassinet where the nurse was taking care of my new son. The doctor turned to me and asked me if I had had the 'stick' test. I didn't know what he was talking about and he clarified it. He didn't talk to me about the ds. A couple hrs later the pediatrician came in and talked to me. He was a Godly man and said kind things. I don't remember much....I remember asking if it (the diagnosis) meant that we would be in and out of the hospital a lot. He said probably not. I was 39, and Josiah was our little late surprise. We didn't know much, but had real peace from the very start that we would love him....just like our other 3 children. Shirley [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see.Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 270.7.5/1706 - Release Date: 10/3/2008 6:17 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 I just read this: http://rhettsjourney.blogspot.com/2008/10/okay-seriously-why-do-i-run-into-all-of.html From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of cshos Sent: Monday, October 06, 2008 4:22 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] What not to say...  After the doctor who delivered Josiah and finished up with me, he went over to the bassinet where the nurse was taking care of my new son. The doctor turned to me and asked me if I had had the 'stick' test. I didn't know what he was talking about and he clarified it. He didn't talk to me about the ds. A couple hrs later the pediatrician came in and talked to me. He was a Godly man and said kind things. I don't remember much....I remember asking if it (the diagnosis) meant that we would be in and out of the hospital a lot. He said probably not. I was 39, and Josiah was our little late surprise. We didn't know much, but had real peace from the very start that we would love him....just like our other 3 children. Shirley ----- Original Message ----- From: runmuch To: DownSyndromeInfoExchange Sent: Monday, October 06, 2008 3:06 PM Subject: Re: [DownSyndromeInfoExchange] What not to say... Someone asked me if I had my " tubes tied " after I had Olivia. Wowaweewow......I had a hard time being GRACEFUL in answering THAT one! Carolyn  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 WOW! I guess I don't inspire that kind of candor from people. Of course my answer to her not being able to have a child like THAT in her family, would have been, No, of course YOU couldn't. This blogger was just a lot nicer than me! ette --------- Re: [DownSyndromeInfoExchange] What not to say... Someone asked me if I had my "tubes tied" after I had Olivia. Wowaweewow......I had a hard time being GRACEFUL in answering THAT one! Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 I wonder how old this cashier is???I would have had her head on a platter. Good thing Pam is a WHOLE lot nicer. :-) Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ Listen to oldest dd's music http://www.myspace. com/vennamusic Re: [DownSyndromeInfoEx change] What not to say... Someone asked me if I had my "tubes tied" after I had Olivia. Wowaweewow.. ....I had a hard time being GRACEFUL in answering THAT one! Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Me, too. I would have, at the very least, reported her to the manager. She has a right to her opinions, but she does not have the right to say that kind of thing to a customer. Another thing that I was thinking was that it probably took that cashier by surprise to see a healthy, happy baby with Ds…she and her sister probably thought that babies w/Ds were not healthy or happy..so that must have been a shock to realize that what she had been told was not true..and her defense was to attack this family who DID have a kid w/Ds. I am not at all excusing what she said…I am just trying to figure out what her motivation was to say those horrid things. kathyR From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of pbeurrier@... Sent: Monday, October 06, 2008 6:39 PM To: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] What not to say... WOW! I guess I don't inspire that kind of candor from people. Of course my answer to her not being able to have a child like THAT in her family, would have been, No, of course YOU couldn't. This blogger was just a lot nicer than me! ette --------- Re: [DownSyndromeInfoExchange] What not to say... Someone asked me if I had my " tubes tied " after I had Olivia. Wowaweewow......I had a hard time being GRACEFUL in answering THAT one! Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Yeah, I think she was probably motivated out of guilt, remorse, confusion at being duped by the medical profession. I spoke to a group of teen girls about DS a couple years ago. One girl said her teen age cousin aborted a baby with DS. This girl was very sad about it, but said the girl would have aborted the baby even if it had nothing wrong. It was a very good discussion to have with teen girls. ette --------- Re: [DownSyndromeInfoExchange] What not to say... Someone asked me if I had my "tubes tied" after I had Olivia. Wowaweewow......I had a hard time being GRACEFUL in answering THAT one! Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 And it's not always what they say but how they act. For example when Hunter was younger and we would be in Wal-mart it always seemed like someone would stop and stare at him. Soooooo, it started getting on my nerves. really. bad. But I found a great solution that made them stop and made me feel better. I'd stop and stare at them till they "got the message". Maybe I'm just mean but my gosh, he's not some freak, he's not ugly, he just looks a little different. I just cannot stand how whacked the world is about appearances!!!! Patty [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08 Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 OH NO! I would have to hurt somebody for that comment! (#2)RubyMy take is a little different, being as we adopted , but my two favs (NOT) are:1. You will surely have a crown in heaven for taking in one of those kids.2. You spent all that money to adopt and you chose HIM? Why? Jules RomeroIf you don't stand behind our troops, please, feel free to stand in front of them!-- [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog :http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see.Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 AMEN.. a dear I have two dear friends who are TERRIBLY scarred. I dunno if they were in fires, or car accidents or WHAT. Never asked. But both have faces that are VERY noticeably different. Its like the bone in each ones face are missing,and their skin is healed looking from a burn.. and they get terrible looks, Both are great people. I felt extra bad for one when we were at a scouting overnight. The girl was complaining about how people treated her bad and how she was embarrassed because of the way her mom looked. My first intent was to whack her on the head.. but I had to maintain composure. I did not know how to handle that. I am sure people do treat her badly.. but to say she was embarrassed by her mom's face.. Hmm.. that made me mad. Steph [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08 Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 People, mostly kids, still do that to Tristan and frequently. The last time, he was looking at books, and made a really cute comment. Something like, " Oh, my goodness! " - in almost a whisper - like he was in awe. He was really glad to find whatever book this was. Well, there were two kids standing nearby, probably 10 and 12 years old. I'd noticed them watching him and snickering back and forth. When he made that comment, they burst out laughing, and it really made me mad. They didn't realize I was with him, because I was not right beside him. I looked at both of them and told them I hoped they weren't making fun of him because that was not nice, and he was a very nice boy and would never make fun of them. Boy, they took off from that section of the store! I've stared back at people who stare at him too. If I'm in a good mood, I'll smile at them really big and hug him or something - letting them know how much I love him. Shari And it's not always what they say but how they act. For example when Hunter was younger and we would be in Wal-mart it always seemed like someone would stop and stare at him. Soooooo, it started getting on my nerves. really. bad. But I found a great solution that made them stop and made me feel better. I'd stop and stare at them till they " got the message " . Maybe I'm just mean but my gosh, he's not some freak, he's not ugly, he just looks a little different. I just cannot stand how whacked the world is about appearances!!!! Patty [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08 Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Sometimes people stare at my son (I just stare back and figure they're ignorant). Usually people say how cute he is . I know one bank teller said to me " Oh '"they" are always so happy; that's "their" capability". I found that comment so irritating! I know even one of my son's pediatricians in the group said when he was 2 weeks old that she remembered as a child thinking that people with DS must all be from the same family because she thought they all looked the same. I found that comment so damn insensitive especially when I was still adjusting to the DS diagnosis. And it's not always what they say but how they act. For example when Hunter was younger and we would be in Wal-mart it always seemed like someone would stop and stare at him. Soooooo, it started getting on my nerves. really. bad. But I found a great solution that made them stop and made me feel better. I'd stop and stare at them till they "got the message". Maybe I'm just mean but my gosh, he's not some freak, he's not ugly, he just looks a little different. I just cannot stand how whacked the world is about appearances! !!! Patty [DownSyndromeInfoEx change] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsbur ger.blogspot. com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08 Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Hey , Check out the reserach I did about 11 years ago on this subject at: http://www.leeworks.net/DDS/speech.html Also, we're making a poster to hang in the hospital nurse's lounges so when parents deliver the nurses don't avoid them and know WHAT TO SAY...here's the stuff that is on the first draft of the poster: Down Syndrome? If a new baby is born in your unit-what do you say? Ø "Congratulations". Yes, Congratulations. They are new parents after all. Ø Be available, it is not the new parent’s job to pursue you. Ø Compliment the child and the parents. Statements like, "She’s a wonderful baby and lucky to have parents who love her." "You will make a difference in his life." "Can I hold her?" “What he needs most is something you have lots of--- love." Ø Comment on similarities between the parents and the child’s facial features. "HE looks just like his Dad." Ø Do acknowledge the grief that parents are feeling. Some things to say would be, "I know I can’t take the hurt away but I wish I could." "It will be O.K. There will be hard times, tears, and lots of fears, but the love and joy will be so intense you will not be able to imagine your life without this little girl!" “You may be sad now, but so many doors will be open to you and your life will be changed forever.” Ø Help them to help themselves. Many times the parent has no idea where to turn. DO NOT SAY OR DO:: Ø DO NOT avoid contact with the family because you don’t know what to say. Don’t be a coward. Don’t hide in fear of the unknown. Your patient needs you now, more than ever if to do nothing else than to listen. Ø Don’t convey pity by saying "I’m Sorry." "What a Shame." "How sad." "Poor thing.” Ø Don’t say things like, "It could be worse." "They all look the same of course." Ø DO NOT Predict future abilities. People with Down syndrome can drive, do work, and do attend regular classes in school. Ø Don’t make any statement that puts blame on the parents. Ø Don’t try to explain why allowed this to happen. Ø Don’t tell parents "I couldn’t do it." I couldn’t handle it." "Your a saint." Refer all new Parents to the Down Syndrome Association of Orange County’s 24 Hour Referral Line www.dsaoc.org , Mom to 15, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html [DownSyndromeInfoExchange] What not to say... With all the current discussion here regarding Drs and the things they have said, Dave's latest blog : http://davehingsburger.blogspot.com/ along with the comments to regarding cheerleading, I thought a good subject for the blog would be what NOT to say to people with DS or their families.Since's it's DS awareness month, care to participate in raising awarness regarding this subject by contributing what you hated hearing to the blog?Kathy and I will compile them all and then post them for the world to see.Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/Listen to oldest dd's music http://www.myspace. com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 Here is one that peeves me...... " Well, they are always so loving and happy. " They look incredulous when I laugh at them and ask them wherever could they have ever gotten that. Then I take the opportunity to remind them that my daughter is a KIDS and just like ALL KIDS she is happy, sad, cranky, loving, goofy, snotty........ GRRRRRRRRR! LOL Quote Link to comment Share on other sites More sharing options...
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