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Post by momofrussell on Dec 17, 2005 9:56:57 GMT -5
We did have parent to parent contacts through our region center back in CA. A mom called me but since I knew about it before Russell was born, I was ok with it all. They asked if I wanted to be set up with a mom and I graciously declined... but it was an option and I think a great one!
A.
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Post by steffipoo on Dec 17, 2005 14:16:00 GMT -5
Okay me? I would've loved to have a mom of a child with ds come to ME and say CRY CRY CRY!!!!! That's okay I did the same thing. Personally I did NOT wanna hear CONGRATS..... I wanted to saw people in half who said it. I wasn't much in the congrats mood. I would've loved a good read maybe from parents who have been there. Like a book telling how they felt and how it changed thru time. Someone who had a child who could follow me thru the first few weeks months. I loved reading this one book with quotes and special excerpts from parents who had kids with disabilities. The new parent book I had and personally I went str8 to the parts of when a typical child does things. I CRIED AND CRIED AND CRIED when I read they won't start walking till 2-3 or talk till a certain age. I guess there was one lady who lives next door to my mom who said to me....(AS SHE SAW ME OUTSIDE OF MY MOMS HOUSE LOOKING MIGHTY TIRED AND FORLORN. "Stephanie.....Congrats... I got tears and she said I KNOW this must be soo hard and confusing....just remember that we love you and you can always come to me to talk..." I BAWLED... She was the 1st person to validate my feeling like I was. Everyone else was trying to pretend that everything was fine and I just neede more time. I neede time to freak out really and her telling me that helped. Not sure the new parent book would've been good for me I know it wasn't cause all I saw was a HORRIBLE future. I didn't read the positives cause I wasn't feeling real positive then. HUGS Steff
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Post by kellyds on Dec 17, 2005 14:34:55 GMT -5
See, now, there probably ISN'T any "right" thing to say. It all depends on the person. My husband and I weren't tweaked at all when Joshua was born. We were 45, we already had five "perfect" children, and we knew the odds. The possibility of having a child with Down syndrome was something we had already talked about and decided wouldn't be a problem for us. So when the doctor took a look at newborn Joshua and said it looked like he had an extra chromosome, we just wanted to make sure he was physically healthy and, after we were reassured that he was well, it was no big deal.
I HATED being urged to "Just let it out! Cry!" I was NOT unhappy. I had a beautiful, blonde baby boy in my arms. There were many, many people who just congratulated us, and I really appreciated that. There were a few who thought we were in some sort of denial or something. "Don't these people understand they just had a baby with DOWN SYNDROME?!! They act like nothing has happened!"
I liked it when people congratulated us, remarked about how cute he was, and maybe asked a few questions about Down syndrome, much the same as they would if a baby was born with any OTHER "difference".
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Post by justinsmom on Dec 17, 2005 15:24:24 GMT -5
We didn't know prior to Justins' birth about the DS. The night he was born after about the first 8 hours he was rushed into the NICU, the docs were GREAT, they told us congratulations on our son, but there are a few complications, ASD/VSD, low blood sugar and pulmonary complications and then they told us that all of this is due to him having Down Syndrome but that everything was fixable and he would be fine. So after 2 days in the NICU he was transferred to the cardiac floor where a WONDERFUL nurse brought in a mom whose 12 year daughter was recuperating from heart surgery and who has DS. She was wonderful, she was just what I needed at the time. The nursing staff was awesome, the social worker was great and even the floor liason was a Blessing and our good ole friend Debbie from housekeeping they all knew us from the girls being admitted numerous times for asthma. Tell your friend to tell the new mom CONGRATULATIONS!!!!!!!
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Post by rickismom on Dec 17, 2005 17:24:00 GMT -5
By all means say "congradulations" but ALSO (and here you have to see how the parents are taking things) be real. Just tonight I was talking by phone to a mother of a seven-month old child who is still basically afraid and ashamed. She told me that other moms had called, telling her that its a priveldge, that these kids are special, etc. etc. I was the first to tell her that yes, it can be frustrating at times, and yes, even professional will feed her a lot of B S at times.... and thus she was more able to hear the good things-- that yes her child will smile at her more, will someday understand things she tells him, will speak and probably read. If you paint everything rosey they won't beleive ANYTHING you say!. Dish it out in layers- good good good bad good good bad....
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Post by belovedlife2 on Dec 17, 2005 19:41:11 GMT -5
rickismom- I absolutely agree with you about the layering of good and bad. After I had Peanut people were telling me all the wonderful things kids with DS can do, but they left out reality. You do need to keep s balance of reality checkin and roses...after all isn't it that way with any child?
Once more, thanks to all who have responded, great suggestions...congratulations, depending on how the parents are coping may not be what they need to hear...but it may be a start. robin
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Post by CC on Dec 17, 2005 21:26:14 GMT -5
Rickismom, I also AGREE with your post, GREAT advise
CC ~
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Post by Cbean on Dec 18, 2005 13:22:37 GMT -5
I was actually quite fortunate when I found out that I was to have a girl who just happened to have DS. I had contacted the head of EI for the state of NJ who emailed me back with information. Her email opened with "Congratulations on your little girl!!!" Another friend who knew I was going for an amnio asked about the outcome. After I told her she responded "But you're having a sweet little girl - how wonderful!"
Then I found Uno and the folks here were so amazing with their responses, well wishes and how they bragged about their babies with posts and pictures! I received so many emails with pics and websites attached. I couldn't get enough of them! In turn, I couldn't wait to see my baby!!! My sadness quickly turned into anticipation again!
So turning back time, I wouldn't have had it any other way. I think a happy, heartfelt "Congratulations!" is the best response!
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Post by Kristen on Dec 19, 2005 20:26:01 GMT -5
I think it depends on the person. I tend toward being a little shocking, so it did not phase me in the least when my best friend's mom said YOU got an angel? YOU got one? How wonderful for you! I said are you crazy woman? She said NO! You are the mama for him and he knew it, you're going to raise him to be the best Carter ever and you know that. This kid isn't getting one break (then comes the shocking part) he's going to be so smart and show all those stupid people and don't worry - you can always get him plastic surgery if he wants it! God bless her! THat just made me think yeah, he's gonna be fine and everything else is all just surface anyway! Not everyone would take it that way, so I wouldnt' go repeating it, but it made me laugh. Somethign that didn't make me laugh at the time, but I still think of her is when I went to the salon and ran into another regular and she asked about him and I started crying ans she said oh, honey, how old are you? I said 25. She waved her hand at me and said oh please, you're still young. You wait and see what comes up and happens to other people as you get older and you'll see this is not a big deal. I was like, yeah, right! Well, I think I see what she was saying now.
I feel for your friend's friend, I really do because I was a wreck. Three years later I am the proudest mom in town. I don't care who looks, asks, talks, doesn't talk, whispers, wonders...I am SO PROUD of this boy of mine, I could burst!
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