Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Maybe it's the time of year, spring and all. The other night at Kristi's music show, did something that he hasn't done in years. He broke away and took off. , Kristi, and me chased him as he dodged six cars in the high school parking lot. Thankfully he made it safely to our vehicle which was parked about a block from the door of the school. and I both had a good talk with him and when I took him to the grocery store the other night, he made it a point to hold my hand all the way in and out. Dad to , Kristi, (all three Ds) and (Cri du chat) Husband to C. Re: what do you say???..... > Lately, Nic has been especially " active " (to put it nicely). yesterday in the post office, he was just plain out of control. He actually ran out two sets of doors and was heading for the parking lot. I was at the window at the time and just dropped everything and ran after him. I really thought the doors were too heavy for him to push open but I was wrong. Anyway , everyone was looking (you know the routine) so I just said " He's a 2 year old in a 5 year old body " . > Di > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 What is it about the post office! Last time I was there, arms full of stuff, my 2 year old took off towards the doors. Now mind you, there was a line so long that it was going out the door so the doors were sorta open (with people standing there), so we'd be waiting a long time. I was at the very front of the line, so like Di, had to drop everything to chase this child who was heading towards the parking lot at top speed. On the way back, I counted... she ran past over 20 people, and not one person thought to stop her (and they saw, because they were all glaring at me with that " bad parent " look!) Maybe I'm more sensitive since I have two " runners " , but I'll stop any little kid running towards danger, THEN look around to see where the parent is. , mom to (6), (4 DS), and (2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 That's good Kerrie, I love it. Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 In a message dated 3/28/2002 11:42:28 AM Eastern Standard Time, b4alltoday@... writes: << Sooooo many of our " starers " just know someone or have had someone with DS touch their lives >> So True. So if you see anyone staring at you in NY it might just be one of my family who love to see and meet other folks with DS. Kathy, Liam's mom (almost 4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Now that my daughter is older, if there are times when we catch someone staring we handle things a little differently than we did when she was younger. If they continue, we loudly talk about how rude some people are, and may even continue our comments along that line loud enough to be overheard by the person. A few times I have suggested we stare back ... and we do so, quite obviously. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 I had an interesting experience the other day, forgive me if I have already told this story, i've been away and I have forgotten where I left off! Anyway, tim went ice skating and in this special needs world he was a part of for the time there he was by far the most able child there. Kind of put his disability into perspective for me! Anyway, this group of adults came in with varying degrees of learning and physical problems. One chap of about 20 ish was profoundly disabled, holding a rattle and chewing it, rocking in his wheelchair, drooling, making funny noises. Well, Tim stood there with his mouth open, totally gob smacked. He has never met close up someone so very different to himself. Eventually I told him that if he wanted to go say hi to the man then that was fine, but that to stare is rude after all tim doesn't like to be stared at. He stopped staring but wouldn't say hello. After being on the receving end of stares for the last 7 years, mostly curiosity and 'ahh' type stares, it was a novelty to have to tell tim it was rude!! sue wong Re: what do you say???..... Now that my daughter is older, if there are times when we catch someone staring we handle things a little differently than we did when she was younger. If they continue, we loudly talk about how rude some people are, and may even continue our comments along that line loud enough to be overheard by the person. A few times I have suggested we stare back ... and we do so, quite obviously. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 Welcome back Sue I didn't hear this story yet. It is interesting! lol Ted will point and stare and anyone different. He even laughed at a man that was walking very differently. I continue to remind him not to point or laugh at anyone different. Gail <<I had an interesting experience the other day, forgive me if I have already told this story, i've been away and I have forgotten where I left off! Anyway, tim went ice skating and in this special needs world he was a part of for the time there he was by far the most able child there. Kind of put his disability into perspective for me! Anyway, this group of adults came in with varying degrees of learning and physical problems. One chap of about 20 ish was profoundly disabled, holding a rattle and chewing it, rocking in his wheelchair, drooling, making funny noises. Well, Tim stood there with his mouth open, totally gob smacked. He has never met close up someone so very different to himself. Eventually I told him that if he wanted to go say hi to the man then that was fine, but that to stare is rude after all tim doesn't like to be stared at. He stopped staring but wouldn't say hello. After being on the receving end of stares for the last 7 years, mostly curiosity and! 'ahh' type stares, it was a novelty to have to tell tim it was rude!! sue wong>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 In a message dated 3/23/2002 12:49:32 PM US Mountain Standard Time, loree5@... writes: > Does anyone have any input on this subject? > > Sorry i'm responing so late. Busy busy!!! My ny is 1 year now. he is still tiny, compared to most babies. He's 17 lbs & about 29 inches. His stature is very " petite " shall i say. People ask me all the time " how old is your baby?? No he's not that old. He's just so tiny. What a beautiful baby. " i always say thank you. I think he's gorgeous. Sometimes i tell people he has Down syndrome. Sometimes i don't. it all depends on my mood for the day. Thank fully i haven't had any negative things said to me. Not intentionally. I would go with your gut feeling. You don't have to announce things to people, unless you feel the need to. Anyway, who cares about what others think?? She is your beautiful little angel either way. {{ DeStefano{{ { Mommy to: Lynn & { {{{{{{{{{{{{{{{{{{{{{{{ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 In a message dated 4/14/02 11:51:17 PM Central Daylight Time, Michdock@... writes: > If I had felt he was more open to things....I might have opened myself up to > > him a bit more,,,,but I didn't....and this is the same attitude we take > with > Maverick and his down syndrome.... we share what we want to who we want. > > My idea exactly!!!! Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 I did not know in advance as you do, but one thing that helped me when I had , was that I talked to my best friend and she told everyone at work that I was happy about the news and ended up fielding most of the questions. She could answer less emotionally than I could. If you have someone like that it helps (it doesn't have to be your best friend, any friend who is particularly gossipy and likely to spread the word anyway will do. By the time I was able to go back to work, church, etc., people were more used to the idea. I think it is easier to field questions when you have a baby in your arms that you are very happy about. In your situation, where people feel free to offer you their values on abortion or who should be permitted in your family, I can see were it would be more difficult. I do have some ideas you may or may not find helpful. Option 1 - Shut down conversation nicely, but firmly If you don't want to particularly share your viewpoint in detail, you could just say " thank you for your input, my husband and I have worked hard to come to a decision that we feel is right for us and our family. We are happy anticipating the joy this new child will bring to our family. " If you can say the thank you part without being sarcastic, it sometimes helps normally sensitive people who have had a temporary lapse realize what they have done. It also lets them know firmly that a decision has already been made, so there is no point in debating it with you. Option 2 - Friendly Follow-On If it is someone you like or someone who genuinely cares for you, you can add whatever details you want, (we really struggled with this decision, we talked to other parents of DS children (including ones with heart problems) and we love the DS child just as we would any other child, etc.), we know that this child may have different issues than some other children and we are hoping to have your support. Option 3 - Avoid Answering If you are looking to avoid answering their questions, reply with a question not with an answer , (after all anyone who is offering you guidance must be doing so based upon some kind of expertise right)? =Oh, I can see you have given this a lot of thought, have you been in this situation yourself? Truly bitchy question, could make an enemy for life. = Have you had direct experience with DS children which lead you to believe they are detrimental to siblings? What else did you observe? = What do you think the specific issues are? =Is it the mental retardation that you think is a concern or the heart issue? I know that I did not phrase these questions tactfully, but as I write this I am getting more livid by the minute. The answer with a question does work though. Sometimes you can get good information from someone by steering the questions away from the abortion issue and towards the making it work better issue. Sorry this rambled so much. I really have found this group helpful and hope you will too. Beverly, mom to (9, DS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 In a message dated 04/14/2002 11:12:22 PM Eastern Daylight Time, thebubsga@... writes: << I find myself at a loss to respond to comments like this, and still feel too vulnerable to just ignore them. Any ideas?? Thanks!! >> Wouldn't it be nice if we could think quickly enough to turn to a woman like that and say, " my children will be blessed by the lessons in love, compassion, understanding they learn from the sibling God sent to join our family. Obviously they don't need those lessons as badly as some others. I may have to let God know what you suggested! " Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 In a message dated 4/14/2002 11:27:58 PM Central Standard Time, cindysue@... writes: > I can't remember where I heard this, but I was told or read that DS is the > cadillac of disabilities. Hi You wont believe this but I told Sara's team that " DS is the cadillac of disabilities " and how fortunate I was that this is Sara's label lololol The Coordinator giggled and said she's never heard this expression before so she wrote it down lolololol I think if I remember right I said this after they were bragging on Sara spunk Kathy mom to Sara 10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 In a message dated 4/15/2002 3:28:10 AM Central Standard Time, denn877@... writes: > I know that I did not phrase these questions tactfully, but as I write this > I > am getting more livid by the minute. The answer with a question does work > though. Sometimes you can get good information from someone by steering > the > questions away from the abortion issue and towards the making it work > better > issue. > HI Beverly I love answering a question with a question heehee my hubby is a pro at this technique to avoid answering.... why he didn't put the trash out on trash day lololol This technique also works with the schools and teens heehee Kathy mom to Sara 10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 In a message dated 4/14/2002 11:11:59 PM Eastern Daylight Time, thebubsga@... writes: << For example, I was told by another mom that I should really think about what is best for my other children in deciding whether or not to terminate, and her opinion was clearly that it will be too hard to give all of them what they need. I find myself at a loss to respond to comments like this, and still feel too vulnerable to just ignore them. Any ideas?? Thanks!! >> This excuse really gauls me. One of my SILs was told this argument by a co-worker when she refused testing. . How could it be best for your other children for them to know if there was anything wrong with them you would have terminated them. It's a much better message that you're accepting this child " as is " just like you accepted them. Yes, it will be extra work and that will take away time from the others, but they will also get lots of extra love. Liam is an only child, but is well loved by his cousins, who are very protective of him. He has added so much to our extended family. This is a hot button for me because of all the pressure I got to terminate. There are a number of people who are no longer in my life because they couldn't accept my decision. Hey, whatever happened to CHOICE, anyway? Anyway... you can gently remind them that this is the 21st century and there's a lot more information about how well differently abled people can contribute to our society. My favorite line is, " Hey with my genes how can any child be less than wonderful? " Kathy, Liam's mom(4), stepping down from my soapbox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 I always say and think consider the source-LOL- I have been told some of the wall stuff too , Like did you do drugs when you were pregnant ? And that is what caused her to be disabled! Or watch other parents pull their children away from her like she is contagious, One person actually told me i had no right to bring her into this world and she had no right to be here. It really didnt hurt me because I am a strong mom and love her dearly and love that she is mine. And Now that she is 9 I am finding stupid comments hilarious, and tell myself to consider the source! And I laugh and walk away. I do beleive our kids are here to teach but some people are just worth wasting my daughter's and my time on. And I know she has the right to be here just as much if not more than the rest of us... . So I dont feel I need to apologize or explain her existence here. NEttie619 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 << I also like to say, " did you mean that how it sounded " ? and after saying it, be quiet and let it hang in the air. >> Kym: I love this! <> If I am in the mood to " mix it up " a bit, I will throw in this comment: " At our local special needs adoption agency, there are families waiting in line for children with Down syndrome. " That always gets them! Lori Mom to Will, 6 1/2 yrs. and , 3 1/2 yrs. (Child w/DS) Webmaster, www.sharingds.org Family website: http://hometown.aol.com/lorimarque/MarquetteFamily.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 That person is naive and uneducated and I'd tell her so!!! some people don't think before they speak and it gets to be rather annoying after awhile. I am lucky, I really haven't run into that .. the worst line I ever got though, was a friend was pregnant, and I had just had about 6 months before.. and we were at a baby shower and she was talking about her baby and how she hopes it's cute, and went on and on about " looks " .. then said " well I don't want no Mongoloid looking baby " to another friend.. my jaw just dropped. I thought her insensitive.. I was sitting right next to her (didn't have my son with me).. back then I was shy and said nothing.. NOW, watch out if someone ever said that!! I've become so much stronger. This girl went on to have another pregnancy, in which something was terribly wrong with the baby and it didn't make it.. I wonder if she learned something. I know I'm blabbering.. I tend to do that!! haha.. butif I have to say anything to you.. it's that your other two will definitely learn a lot of love and patience, and understanding.. Because they have a brother who is going to make SURE of it!!! the bond between siblings is like none other.. I see my older two with them and it's so precious. Shar ----- Original Message ----- From: Walt & I am quickly learning who I want to disclose information to and who I want to just avoid in general! Does anyone have any good come-backs for insensitive and ignorant comments Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 <<and their tomorrow's are not promised either.>> So true, Kathy, so true! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 What a great idea!!! as well as Educate Educate... we become the teachers for a long time... it's so funny the way people think.. like it was something we did in our pregnancy!! which is so funny to me, considering I wouldn't even take tylenol in my pregnancy! I guess because I was 25 and not your typical " over 30 " .. people thought it was something I did.. Shar ..................... What you could do is send an announcement to people you want to. Let them know that your son will have DS and a heart defect. Include information that you have high hopes for your child and he should do very well with heart surgery. You'd appreciate their prayers and support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 There's also that line from the disability advocates-- " my [child's] greatest handicap is your attitude. " Why anyone would want to make the situation any more difficult than it needs to be for an expectant parent is beyond me. Maybe that should be the kind of response--something like, " my family is in the process of dealing with and preparing for the birth of a child we know will be challenged and will challenge us. It's fortunate that you were not chosen for such a challenge since you do not feel able to meet it. But please don't project your limitedness onto us or expect us to deal with it. If you would like to share in our celebration of our baby, you are welcome to do so, but please do not offer your negative opinions or try to make us feel guilty that we are choosing to accept this challenge. " Or maybe " if you can't say something positive and supportive, don't say anything at all? " Or maybe just print out one of the fact sheets on ds and hand it to such people without comment? Judi Re: what do you say???..... In a message dated 04/14/2002 11:12:22 PM Eastern Daylight Time, thebubsga@... writes: << I find myself at a loss to respond to comments like this, and still feel too vulnerable to just ignore them. Any ideas?? Thanks!! >> Wouldn't it be nice if we could think quickly enough to turn to a woman like that and say, " my children will be blessed by the lessons in love, compassion, understanding they learn from the sibling God sent to join our family. Obviously they don't need those lessons as badly as some others. I may have to let God know what you suggested! " Cheryl Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Hi , People like that make me so mad!!!! Ask her what she would do if one of her children developed a serious problem in life, terminate it!!! Also ask her what it says to your other children. If there is something wrong with me maybe mommy won't want me either. We all come into life with our own set of problems only some are more visible then others. Does she know what unconditional love means?? I think not. Just my own opinion. Loree5 Thankful for all my children with the good AND the bad things because there souls are all the same shape, color and size God made them perfect!! Re: what do you say???..... In a message dated 4/14/2002 10:12:02 PM Central Standard Time, thebubsga@... writes: > I am quickly learning who I want to disclose information to and who I want > to just avoid in general! Does anyone have any good come-backs for > insensitive and ignorant comments? For example, I was told by another mom > that I should really think about what is best for my other children in > deciding whether or not to terminate, and her opinion was clearly that it > will be too hard to give all of them what they need. I find myself at a > loss to respond to comments like this, and still feel too vulnerable to just > ignore them. Any ideas?? Thanks!! > > > Mom to , 5, , 3 1/2 and new baby boy due 7/13/02 HI I first want to welcome you, this is so neat I love waiting for babies to be born......heehee so your little one will be loved as soon as he/she takes his/her first breath Now as far as the comment made to you (from above) I cant tell you what I would have said.....not on this list heehee geeeeeeesh some folks are clueless and their tomorrow's are not promised either. Again, Im so happy you are here you'll have to write often to keep us posted Kathy mom to Sara 10.........and 3 other kids who say they've been blessed with their little sister Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 In a message dated 4/14/02 10:12:10 PM Central Daylight Time, thebubsga@... writes: > I am quickly learning who I want to disclose information to and who I want > to just avoid in general! Does anyone have any good come-backs for > insensitive and ignorant comments? For example, I was told by another mom > that I should really think about what is best for my other children in > deciding whether or not to terminate, and her opinion was clearly that it > will be too hard to give all of them what they need. I find myself at a > loss to respond to comments like this, and still feel too vulnerable to > just > ignore them. Any ideas?? Thanks!! > > > Mom to , 5, , 3 1/2 and new baby boy due 7/13/02 > > , What will never cease to amaze me is the people that think they should have any opinion in someone else's business. I'd probably want to say something like " at least my children won't have the burden of you as a mother " or " I hope your children don't grow up as close minded as you " . OK, those are really nasty and I'd never say them but I'd really like to. Many of these people will do an about face when they meet your beautiful baby. Good luck, Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 What I would like to know is how all these bitchy stupid people know that your baby has DS at this point. Who has told them? Jessie, mom of , age 37, the light of my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 In a message dated 4/15/02 8:36:31 AM Central Daylight Time, b4alltoday@... writes: > Hi > > You wont believe this but I told Sara's team that " DS is the cadillac of > disabilities " and how fortunate I was that this is Sara's label lololol The > > Coordinator giggled and said she's never heard this expression before so > she > wrote it down lolololol I think if I remember right I said this after they > were bragging on Sara spunk > > Kathy mom to Sara 10 > > While I adore the many children that I know with down syndrome I must > protest this very broad generalization. I have worked with many children > and adults with many different disabilities and have found wonderful kids > with many different labels. I think with every disability comes a range of abilities and disabilities. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 In a message dated 4/15/02 9:40:48 AM Central Daylight Time, Mom2lfm@... writes: > This excuse really gauls me. One of my SILs was told this argument by a > co-worker when she refused testing. . How could it be best for your other > children for them to know if there was anything wrong with them you would > have terminated them. It's a much better message that you're accepting > this > child " as is " just like you accepted them. Yes, it will be extra work and > that will take away time from the others, but they will also get lots of > extra love. Liam is an only child, but is well loved by his cousins, who > are > very protective of him. He has added so much to our extended family. > > I don't know about all of you but the things I have learned parenting have made me a much better parent and just all around person. I would never have gained all that without him and his brother is all the better for it. Karyn Quote Link to comment Share on other sites More sharing options...
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