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Post by twosomy21 on Feb 25, 2008 13:18:50 GMT -5
i feel my boys are farther than.... but i feel the misconceptions from people to this day i think it is a daily commitment to try and show people that our kids are kids first and not burdens as all those "faces " seem to think i once told kyles principle at preschool "please do not refere to him as a happy child" and went on to tell her all the things he is -that is a misconception , have to say i really have not heard that since ,i think we eradicated that statement-see we can do it
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Post by Kaylis on Feb 25, 2008 21:12:33 GMT -5
For me it wasn't what Mikah would or wouldn't do that really surprised me... The biggest was how my parents would react. Here I was at 18 wks gestation or so justifying to them why I didn't and wouldn't abort him. As part of it, I had no idea of how many fetuses with Ds were aborted due to early diagnosis. That floored me! My folks have come around somewhat, they show how much they love him and all, but they still question why I'd "burden" myself or his older brother when I had a "choice". Grrrrr.
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Post by Renee' on Feb 27, 2008 9:10:28 GMT -5
Kaylis I had people who were not in my family ask me that question! There was a nurse that came to our house for my insurance screen. Lauren was in the hospital still and she noticed the ITS A GIRL sign. She asked where my baby was and I told her she was in the hospital. Of course she wanted to know why so I told her she had Down Syndrome and a serious heart issue. She turned to me asked "Did you know before she was born?" and I said "Yes" Her reply was what floored me "And you kept her? Why didn't you terminate?" Needless to say you don't say that to a sleep deprived post pardum woman! I threw her out of my house. We has several people ask that question.
I too had no idea how many women aborted just because the child would have DS.
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Post by kellyds on Mar 15, 2008 11:47:20 GMT -5
I had our fifth child, and then five miscarriages. My doctor had told me he thought I kept miscarrying because my age had caused my eggs to have chromosomal damage. After the five miscarriages, I got pregnant with Joshua. Because I was 45 and with a history of miscarriage, I knew there was a big chance our baby might have DS. We didn't have any tests when I was pregnant, because we really didn't care. I did think that we'd know right away if he had DS . . . that he'd look obviously "different" as soon as he was born. I caught this one as he was being born and I didn't think he had DS because he looked like any other newborn. The nurse noticed the low muscle tone right away and started pointing out other really subtle things, and we agreed that he probably had DS. But, I was surprised that he looked so much like "any other baby" when he was little.
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Post by dibrom on Mar 19, 2008 8:38:17 GMT -5
I was told Ethan would not be able to breastfed- He started nursing at day 3 and did it for 9 months I was told he would always be happy and friendly- NOT TRUE! He does not like strangers, which sounds like a good thing until a little Grandma spots his bright red hair and wants to talk to him- He tells them to "go away!" I was told he would be small with a short stature- He's 97% on a "typical" chart. I was told he would probably not talk- Honestly he doesn't stop.
I was also told he would never be able to cut well- BY AN OT- if you could believe that! She said "it's not that important, they really don't use scissors much after Kindergaten" I said "Really, how many times have you used scissors today?" I made them put cutting within 1/2 an inch line on his IEP. Less then a year later he can now cut on the line, squares, circles and other objects. Needless to say I also made them find him a new OT........
And I am with you Chris too- they did tell me he would never be a father and with all the other info that was the hardest thing to deal with. But I'm sure he will be a great Uncle.
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Post by marcy on Mar 31, 2008 20:51:16 GMT -5
My daughter, Bethany, is a beautiful, bright 4 year old. When she was very young I was told by a DS "expert" that all toddlers with DS exhibit the same capabilities and then as they get older you see more of a delay. A special ed teacher also once told me that she never heard of an adult w/DS living completely on their own. Well, I'll tell you that neither of these people should be giving info/advice to parents of kids w/DS - they don't know what they are talking about. My daughter has been cognitively equal to the all of the typical kids I know ever since she has been a baby. In fact, she is currently at a regular preschool, in a class of 15 kids, and the special ed teacher there tells me that she knows more that most of the typical kids in the class. She is starting to read sight words and can write her name. The teacher tells me that she will be reading simple books before she enters kindergarten! Her biggest problem is a speech delay. Bethany says a few 5 word sentences, but mostly speaks in 2-3 word phrases. But, she's coming along in that area. Also - I learned from people on this website that it is very common for young adults with DS to live on their own, go to college, live in dorms and then live independently. I worry about Bethany's future every minute of the day, but I also hope every minute of the day that she will continue to do so well and be an inspiration to others as well!
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Post by jelanismom on Mar 31, 2008 21:42:49 GMT -5
My son Jelani Paul is 5, and a bit more delayed because when he was born he weighed only 1 lb 6 oz...so he's catching up...and after all he's been through from surviving as a micropreemie, he's accomplished more in his little lifetime than most. He beat the odds and I am truly blessed every day and so thankful he's with me. He brings such joy to my life and I can't imagine life without him...he's my very heart.
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Post by advocate4myself on Apr 15, 2008 19:11:33 GMT -5
Never, never let others define what your child can do. They are simply using a chart in their minds. And never, never, overestimate what your child can do. We all have our abilites and excel in them. I was born in the early sixties. Back then it was really different and there were many uneducated people including the professionals. All they had was this stereotype in their minds. My parents believed in me and never have stopped in believing in me. I may not be living a completely independent life but I do have independence including independent thoughts. And I think that it all starts with hope and education. Misconceptions is what I call "society ignorance" of what we can really do. I have come a long, long, way from what I used to be.....................Debbie
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Post by char on Apr 27, 2008 9:27:37 GMT -5
My little granddaughter had so many problems that could have proven to be deadly that all I wanted was for her to live. She is a beautiful, wonderful little girl who will turn three in June. She has thrived with early intervention and a fantastically supportive family. My greatest thrill is hearing about each new thing that Miss Abbigail has learned to do.
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Post by NZ Carolyn on Jun 6, 2008 19:38:43 GMT -5
Hey A! I haven't read any of the responses yet but what a neat name for a book! Well done you! Emma and Nicki sure have come a long way baby. I have to say I still get a bit frustrated because I do expect so much of them but by gosh they have taught me way more than I could ever teach them. I'm in constant awe. Love ya's Carolyn Mum to a multitude (Harrison a nervous 16 year old - his school ball is tonight - I guess that's like your prom night?, Claudia 14 going on 17 and a super super cool kid, Emma 12 (ds) and gorgeous gorgeous goregous and Nicki 11 (ds) and just so amazing it's beyond words )!!!!!
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Post by bigmvr on Jul 22, 2008 23:24:53 GMT -5
Hi! Matthew our son was diagnosed with DS and with some complications with Hydrops he had congestive heart failure and they could not see his stomach in the Ultrasounds. The Dr predicated Matt would come out not moving and he would have to be revived by the NICU team waiting with a crash cart. Matthew came out peeing on the Dr. and screaming like he meant it. At 31 days old (30 days in the hospital, we just got him home) he continues to exceed expectations. Thats my son! Oh, when he came out a nurse said he will have poor muscle tone. He is a preemie (due date is Aug 11th) and even at this stage on his stomach, he can use his hands, lift up his head and switch views laying his head to the right or left. Thats my son!
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Post by ctorres on Sept 4, 2008 23:57:38 GMT -5
It has been an incredible 2 year journey ! When Adan was born I took one look at him and knew something was wrong. I felt an incredible pressure on my chest, the room darken and the walls close up. I was so scared and the doctor confirmed my suspicion of DS a few hours later. My biggest fear was that my family and my husband's family were not going to love or accept him. Adan has brought so much happiness to my family that we live through each other and its seems as if all our hearts are circuited together. I am happy to say that I was wrong my family and husband's family love Adan soooooo much ! What a blessing God has given me - I feel like the luckiest mother alive to have such a wonderful loving family brought together by one perfect baby !
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Post by sd112170 on Sept 20, 2008 21:15:09 GMT -5
I was four weeks pregnant when I was told John appeared to have ds. The doctor talked with me and my husband about it(doing the normal testing). He was so ready to do an abortion and assumed we were to. I just looked at the man when he said we could "decide" on what we were going to do after the amnio. I LOOKED at him and said " decide what? This is a life forming in me. NOTHING will be done." Other than the leukemia at birth, John has no defects. Strong heart, strong will and a perfect little boy. I shutter at the thought that there are people willing to discard a precious little gift.
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Post by Jackie on Sept 23, 2008 4:16:27 GMT -5
I couldn't sleep tonight so got up and am on the pc. I reread this thread and it is such a good one. I hope new parents and those who are to become new parents are reading it too.
My babe (Well....at 28 she IS my youngest...LOL) is in the middle of her "vacation"...outside of D.C. She flew by herself from Austin to Baltimore, met Marnie her sister and drove with her to SC where she celebrated her niece's 3rd bday. This weekend they will be off to NYC for the video in Times Square and the Central Park Buddy Walk. Emily is having the time of her life...so all of you just starting out with all this...the best is yet to come!
Jackie
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Post by sd112170 on Jan 7, 2009 22:57:26 GMT -5
It really is a precious thread. This is something you could read over and over again. So uplifting!!
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