Down Syndrome Baby

Updated on November 03, 2009
N.S. asks from Ortonville, MI
11 answers

My cousin just had a down syndrome baby, and I tend to feel awkward in situations that I'm unfamiliar with. Are there things that people say that annoy people with down syn babies? How do I prepare my kids for visits as they get older? Thanks for any and all advice you can give.

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V.P.

answers from Detroit on

Remember that it is a baby first and foremost, it is still a joyous occasion. If she wants to talk about the DS issues, then listen and offer as much comfort as possible, is she doesn't then don't say anything about it. I have a 5 year old daughter who is down syndrome. I did not know until she was born and was devastated by it initially but over time and with the help of loving family and friends I have no idea why I felt that way back then. My daughter is the best thing that ever happened to me and I wouldn't change her for anything. I do hope that she will reach out to the local support groups, they can make a world of difference and can give REAL answers and advice. Have her contact Families Exploring Down Syndrome (FEDS) they are an amazing group of people. My best advice to you is to act like you always do and let the conversations flow as they may. Be supportive if that's what she needs, not depressing. It is a baby, a great gift to have been given.

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C.M.

answers from Lansing on

My biggest piece of advice is to treat them the same way you would treat any other baby and do not tell the parents you're sorry!!! That had to be the most irritating thing that happened to me. I have a 12 yr old son with Down's and he is the joy of our lives. He has taught us more than we could have ever imagined. They are the same, they learn slower, but they will learn anything that you and I would!! My middle son is 7 and he just noticed a difference last year in academics, but my 7 yr old is also is very advanced academically. My 12 yr old plays the same, is a productive part of our family the same, does chores around the house the same, and is diciplined the same as the other 2 children. We do not treat him any differently. He plays basketball and football with his typical peers in addition to his special olympics. I guarantee, except for some physical trait differences, you will not notice a difference and you will fall in love with them the same as any other baby you would ever meet!!

If you have any more questions or would just like to talk, email me. I am the President of a local Down's support group Capital Area Down Syndrome Association in the Lansing area, and would love to send you some info if you would like it.

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D.Y.

answers from Detroit on

Well, first of all, stop saying "Down Syndrome Baby". It's a baby. The baby happens to have an extra chromosome. The baby is not a special breed of human, so there's no need to put that in there. That's a HUGE annoyance.

Don't say you're sorry. Congratulate them! It's a baby, and a baby being born is a joyous occasion! Ask the big questions every parent needs to hear: "how is the baby doing?" "Do you need help with anything?" "Can I bring some dinner over?" etc

If you think your cousin is having a hard time handling the situation, try directing her to support groups. This is a great local resource: http://www.familiesexploringdownsyndrome.org/

And check out this link for excellent answers to your questions: http://www.familiesexploringdownsyndrome.org/family.html

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G.L.

answers from Grand Rapids on

It's more polite to put the person first, as in, "My cousin has a baby with Down's Syndrome."
I would talk to your cousin, let her know that you're concerned about offending her and that you truly want to be supportive. As for your kids, depending on how much they get to see your cousin's child, by the time they notice a difference he or she will be such a part of their lives that it won't be an issue. My very close friend since childhood has CP and I almost never remember because there are so many other things about her that are more important.

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K.V.

answers from Grand Rapids on

I read through the link posted by a prior poster -http://www.familiesexploringdownsyndrome.org/family.html and there were some good suggestions however, I found it annoying when people would come to me with research I just HAD to read (did they think I didn't care enough to research myself??).

I did find it helpful though if people had relevant experience with a family member/friend/neighbor - especially if they were adult age hearing that they were working or somewhat independent. However, don't predict what the child will end up being/doing. I had people say "oh, he'll be just fine. He'll go to college even." or "Before you know it he'll be driving." Really?? Are you sure?? Do you have a crystal ball? I don't.

Our first child has Down Syndrome. We had a lot of feelings like we would never have an "empty nest", we would never have grandkids, would we ever have a healthy child? It can be very devastating. Our child is also deaf so that brings on a whole other level of disability. Most people's children with Down Syndrome can be included with their peers. Mine will always have barriers to that so I resent when people talk like it's so easy to have a child with Down Syndrome. And you really don't know the level of cognitive impairment until they are much older.

My advice is to be as supportive as possible, make it clear you have no intention of abandoning them, and try not to predict the child's future. Just be in the present.

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C.B.

answers from Detroit on

Nat,
I think much has to do with the severity of the diagnosis. For instance, I help out at a karate class in Northville and one of the students is mildly DS. But I'll tell you this: she has more focus and determination than the rest of the class combined. And she's aware of her diagnosis; in fact she wants to write a book on surviving with DS. And she takes classes at, I think, Schoolcraft. Actually, she's much of my hero. So the severity has to be determined.
But acceptance, being given a chance to succeed and survive, being treated fair. Teach your kids compassion and fairness, that everyone is different in some way. Teach them to be strong enough to stand up for their cousin if someone shows rudeness. DS, and just about any mentally disabled person will show unconditional love a lot of the time. That kind of love can be found in the New Testament.

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M.H.

answers from Detroit on

I agree with other posters. Treat the baby as you would any other, and treat your cousin as you would if her baby did not have Down's Syndrome. Ask her how she's doing, how the baby is, and take your cues from her. The baby may have other health problems due to the Down's Syndrome and your cousin may or may not want to talk about that with you, just let her know you're there if she needs any help with her new baby.
You really don't need to "prepare" your children for visits with the baby. Young children rarey notice differences with other children as adults do, they tend to just take everyone as they are. If you try to prepare them for visits they are more likely to treat the baby differently. My youngest is at a Head Start school which has lots of children with "special needs". I volunteer there every week and he has never treated the children from those classes any differently (or even asked me questions about them), this is because the teachers do not treat them differently and do not point out their differences, and the children do not notice.

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A.H.

answers from Detroit on

If you are uncomfortable - research the issues that she is facing.

Make sure that she is aware that you are there for her... This is a frustrating time as well as a joyous time, many emotions are being experienced. You are not going to know if you offend her as it seems to be new to both of you. And what offends one person will not offend another.

As for your children - I feel they are not old enough to quite grasp health defects yet or fully understand what occurred. Not to mention, children say the darnedest things outside our control. Plus if you do not make an issue of it - they will not either.

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B.C.

answers from Detroit on

treat them normally. Fall in love with that baby as you would have if they hadn't been. Your cousin will take the cues from you. Just be yourself. I have friends that have a son that is now almost a teen and he has many of the same problems but they all loved him and acted as if..he could do anything. they'll have special needs in some way but in general are the most loving people on the earth.
Remember the actor with Downes? He played Corky on a show?
Talent is not confined to the "normal" people. someone said normal is a setting on a dryer. so love your cousin and the child and see what wonderful things happen to all of you
BeckyC

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D.G.

answers from Grand Rapids on

I have to agree with the other ladies, treat the child like you would any other child, or better yet, treat the child like a member of the family. As for your children, they will know him as their cousin and most like won't notice his differences until somebody points it out to them.
I personally think that children with down syndrome are the cutest! :)

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K.S.

answers from Grand Rapids on

I so appreciate you being so compasionate to ask these questions. I have 2 daughters with Down syndrome and I feel totally blessed with my girls. I am real sensitive to when people find out about my situation the first words out of their mouths are "oh I'm so sorry" ..sorry for what? Also don't refer to it as Down's, it is Down syndrome. I treat my kids as normal as possible and expose them to as many people and experiences as I can. They are children and people first and their disablility should not scare you. Your kids will be fine and they will be more compasionate in the long run the more they have to do with this baby (you didn't say girl or boy)but start their exposure to him/her as soon as possible because if they grow up with it you will find that less preparing is needed. Please feel free to email me if you want and I hope your cousin is plugged into an association in her area. I am part of the Down Syndrome Association of West Michigan and my email is [email protected]____.com Good luck and God Bless you and your kind heart. K.

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