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Post by belovedlife2 on Dec 15, 2005 16:01:49 GMT -5
I got a call two nights ago from a friend of mine, lets call her Abigail. She was looking for the title of a book about a child with DS. I was curious, as to why she was looking for this title, as she really never showed an interest in Peanut or the DS. Abigail told me she wanted it for her friend who had had a "Down syndrome baby in Trenton, NJ". She said that the girlfriend needed some good reading. Instead of the book she had called me about I recommened another title, The new parents guide to Down syndrome, as it had more relevance and was quite abit more reputable. Abigail then asked me what she should say or do for her friend. The DS was a surprise and mom is very upset. So it got me thinking back to when I had Peanut. What would I have wanted to know about or have had said to me to make me feel better? My first thought was congratulations! You could not even begin to imagine the number of phone calls I got that sounded more like condolence calls then new baby welcoming calls. Let me tell you how depressing that was! It was such an insult to my family and to me. The other thing I would tell a new parent would be that people are stupid. They say stupid things when they are unsure of what to say. That it is so important to treat people as if they are stupid and you need to educate them about DS and what it means. Without the education people mean well, but can really insult another persons feelings. So I guess the underlying theme would be to give the benefit of the doubt. Assume that people meant well, even if it might have come out wrong. Ok, so now I pose a question to you: if you could go back in time to when you first found out about your childs DS, what would you have liked to have heard? What could someone have said, or did say, that would have been so helpful to you?
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Post by Jackie on Dec 15, 2005 16:05:34 GMT -5
I would like to have heard:
"Congratulations on little Emily! What do the other kids think of her?...and...who does she look like? Aren't you all just soooo excited!"
Jackie mom to Emily 25
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Post by momofrussell on Dec 15, 2005 16:41:57 GMT -5
Yes.. Congrats on the new baby.. says it all! I didn't have family or friends saying "sorry" but we all knew prior to the birth. I also, am one that doesn't get too caught up in words or WHY people might or might not be saying it. I don't know if I'd personally say that people are stupid persay.. only because I am not a fan of the word "stupid".. I'd maybe just explain that people can be "silly" (we use that in place of stupid here ) and will say things to CONNECT with others..even if they really don't know what they are truly saying. Good luck! Also.. maybe just have your friend offer herself to them in what ever they need. Do they have an older child that needs some attention like a trip to the park or movies she could offer services? Or, offer support ONLY if she needs it? Something along that line.... A.
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Post by wrblack on Dec 15, 2005 17:36:52 GMT -5
Dunno. We were pretty messed up back then--and some people think I'm messed up now. But, Trenton, NJ. Did you say a new baby in Trenton, NJ? I'm in Trenton, NJ. Well, practically. Send your friend this web site, www.dsacnj.org/Tell your friend to tell her friend to pick up the phone and call (866) DOWN SYN or (866) 369 3796--that's not the same, is it? Our local organization has a whole collection of books. And a bunch of people who would love to visit a new baby. Hmpf, too bad they missed the holiday party, both a magician and Santa were there. Santa gave Charlie a new and highly irritating Barney toy. But maybe we'll meet them at the picnic in June. Cheers, Bob
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Post by ashleysmom on Dec 15, 2005 19:59:40 GMT -5
The best thing anyone could have said was "Is that it DS?" Thank God that is all. That was out of my dad's mouth who has been a ski instructor for the ds special olympics(sp?) for about 8 years.
My other friend Dawn said when she saw her she looks fine and will be OK and she was right.
I live in Burlington County NJ about 20 min. south of Trenton if she needs someone to talk to. Give her my email perrimasly@aol.com or you can email me and I'll give you my # to give her. I have NO problem going there or talking to her. Would love to see the baby.
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Post by Many on Dec 15, 2005 20:44:55 GMT -5
I would like someone to say:
Congratulations! She is just like any other babies. You just have to spend more time to teach her things.
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Post by dannysmom on Dec 15, 2005 21:17:18 GMT -5
I am so grateful to have received excellent care at the hospital where my son was born. We learned at birth about Ds and his heart defect. We were at a smaller hospital so they probably hadn't seen a baby with Ds in quite a while. They staff really went out of their way to help us accept and understand about Ds.
A nurse in the hospital gave us the poem Welcome to Holland. I think that poem says it all. We were so moved by the poem...we changed my son's middle name from Nicholas to Holland.
As for what people would say....My mom said the exactly same thing as Annette father..."Ds....that's it? So what?? My family has always had that attitude...like they understand things are a bit more difficult and of course were worried about heart surgery..I mean....they don't see Ds...they just see Daniel.
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Post by Chris on Dec 15, 2005 21:35:25 GMT -5
We knew well in advance that Sarah would have Ds and a major heart defect. When I went in the hospital in labor, I told everyone not to pity us because we were thrilled about our new baby's upcoming birth. We really didn't have any problems while in the hospital. I think our situation was unique since we had already had a lot of time to settle the Ds issue in our heads.
I think the most reassuring thing anyone said to me was from my grandmother and mother-in-law. They simply said that they will love Sarah just like they love all their grandchildren. For some odd reason, my greatest fear was that I would be the only person who would love Sarah. Boy, was I wrong!!! ;D
I am not an outgoing person, actually, I am quite shy. I wish a parent of a child with Ds had called me. I think it would have been a great encouragement if I had started meeting other parents before Sarah was born. I didn't get up the courage to meet anyone until Sarah was almost five months old. I remember how comforted I felt when I saw all these small children with Ds just being kids.
I agree with you about assuming that people mean well. I think a better word for stupid is ignorant. Ignorant simply means that they lack knowledge. Ignorance can be cured with education. I certainly was ignorant about people with Ds a few years ago. I am continually learning more as my daughter teaches me.
I wish I could meet this mom and her new baby. I would hold the baby and make a big fuss just like I would any baby. I dunno, babies just make me mushy.
Chris
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Post by LisaRI on Dec 15, 2005 21:54:11 GMT -5
Hi Lisa, Was it Kent County hospital that you have delivered Daniel? I had both my girls there. They were very good to me! A nurse gave me a couple phone #'s of Moms who had children with Down syndrome. Dr. Pueschel also came in to visit me and Kimberly. He's been my daughter Kasey's doctor for her PKU since birth! ;D Kasey was born with Phenyketonuria (PKU), so when I had Kimberly and she was born with Down syndrome, everyone felt really bad for me. But they all Congratulated me and loved her to pieces!
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Post by CC on Dec 15, 2005 22:49:34 GMT -5
The BEST to me is just CONGRATULATE them as you would any other birth ;D My brother walked in with beautiful flowers tied in a ribbon gave me a hug and said CONGRATULATIONS you have given birth to the first little boy in our families ;D up to this point only girls were being born between by bro and me I loved him sooo much for how he handled it, he was the BEST ;D I actually told him most recently how much his reaction to Christopher's birth meant to me and I love him for it ;D For me I needed to be and not be given as much info as i was from others when Chris was first born. I needed to be the one to reach out and ask when I was ready and although I do think people mean well, I really wished they would have backed off on all the info bout DS till I asked, KWIM?? Just my thoughts CC ~
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Post by ALLISA on Dec 16, 2005 10:42:11 GMT -5
I have to guess that I was pretty lucky when Erin was born...because I don't recall much negativity..... EVERYONE congratulated us....I got more cards for Erin's birth than any of my kids....it moved me to know that people were keeping us in their thoughts......... NO ONE said "sorry".....the one person who came close did it so beautifully & correctely..... it was the delivery nurse who was there when we arrived at the hospital , but her shift ended and when she returned the next day & inquired about us....she heard the news....we had laready left for Children's Hopsital at that point but when I returned to have a final check from my OB....she came right in, hugged me & let me cry and said she was sorry for the stress we were going through.....not for DS... but for the stress....that was perfect to me. I, too loved the Holland poem & still do !! I have posted it here about a zillion times to new moms ! You'd think I was the one who wrote it ! LOL Beloved..... you sound like you are still very hurt by things that people said to you....and you are right that people don't mean what they say....they just don't know what else to say......just as most of us didn't know what to say or think when we heard the news ourselves. The thing I do remember hating to hear was...."Do the doctors know how bad it will be ?" "Can they tell if it will be mild?"....I always hated those questions and my standard answer was....."no one knows, and we'll love her no matter what happens". The other thing I remember.....LOL......LOL....... Is that EVERYONE had to tell me that "they once knew a guy who had a cousin who lived next door to a kid with DS"....no what I mean ?
Everyone had to share their DS person with me even if it was a person they barely knew...they had to "share" the connection ......and.....LOL......Corky from Life Goes On...... Anyways....kind of changed the theme here, but you got me reliving and re-remembering...... Allisa
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Post by belovedlife2 on Dec 16, 2005 12:46:17 GMT -5
I appreciate everyones responses..thank you for sharing what you would have liked to have heard. I do feel that I should add that I am not hurt by the way people reacted back then. As I said the best peice of advice I had gotten was from a mother of five kids three of whom had special needs ranging from CF (the child passed a way shortly before I had Peanut), to autism. She is the one who told me people were stupid (or silly, depending on how you want to say it). That really helped me through a lot at the begining as well as continues to remind me to give people the benefit of the doubt today. At this point in our lives with PEanut, People are just ignorant and well meaning....I do my best to educate them....I guess the way she put it to me was bluntly and too the point, no beating around the bush with her. Thanks to all who shared their responses, when I get ahold of my friend abigail, I'll forward the link to unomas21 and all your kind suggestions. Happy holiday to all Robin
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Post by firerose98 on Dec 16, 2005 12:51:14 GMT -5
Oh... I was pretty upset about the whole thing when Gillian was born. One thing that I did find helpful was being told that it was OK to grieve for the loss of the child that you were expecting, but then to get over it and enjoy the child that God gave you. I found Jeremiah 29:11 and Psalm 139 to be very helpful and comforting.
I did have one friend call and actually tell me she was kind of jealous. That was really hard for me to understand at first (she was 41 and had her son the day before Gillian, no complications of any kind), but she was kind of jealous that God would trust me with Gillian. I know it sounds kind of screwy and I know she loves her son very much, but she definitely looked at the responsibility of caring for a child with DS as a blessing from God and not a burden. He had to think that Dan and I were strong enough to trust Him and meet the challenges of raising a child with "disabilities".
Michelle
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Post by Alice on Dec 16, 2005 13:25:23 GMT -5
Wow! Good question!
As we had the news about our son's DS, we were very shocked and upset. My son's caseworker told me the thing that made me feel much better, that the list of people who want to adapt these kids is very long. I like when people say that they wanted to have children with DS just like mine, but was not lucky to have them. I like to hear that my son is a precious doll and has no difference from other kids.
She needs to know that her child with DS will not necessary have all problems as its on the list for all kids with DS. She doesn't need to know all scary info about kids with DS (it is not smart by those doctors or case workers to give that info to the new parents - who are already scared...).
Also, I've got a huge support from Uno Mas mom's (they know all about DS, not that f** doctors). Pictures of other kids with DS is very helpful too.
Please tell your friend about this site.
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Post by andrewsmom on Dec 16, 2005 20:21:40 GMT -5
I have to agree with Chris. I would have LOVED to get a phone call from another Mom. I think just to have someone to talk to that "understood". Our family was really good also but they took to the internet to get information and ofcoarse came up with more Mis-information then reality. So talking with another Mom could have really helped wean out the good info from the not so good...kwim? -Trisha
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