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Downs support group?

I just get the results from the genetic quad blood screen (typical blood work for pregnant women) and my midwife called in the middle of the night to let me know that the elivated levels of something showed that my baby has a good chance of having downs syndrome. Now, they are going to do more tests (a 4D ultrasound to look for physical signs and an amnio) but I want to be prepared. Does anyone know of any online support groups for parents with downs children? Or does anyone have a downs kid? I'm in complete shock and am so scared about the future. i have a 7 mo. old son right now (I'm 4 months prego) and am in my early 20's and was sooooo not ready for this. Thanks.

Fri. Aug 17, 1:29pm

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you may want to consider an abortion. If you have a downs kids, the odds of it destroying your family are very high. People all around you will say "ohh, this can be a blessing." They are wrong. If this is really the case, this is the time to do something about it.

Friday, August 17, 2007, 1:44 PM

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1:44 that is a pretty tough statement, but true I think. I'll try and find exact figures, but I think the odds of divorce with a severly disabled child go up to over 80%. And the effect on the other children is severe. That is the other thing to think about- deciding to keep a severely disabled child is very very tough on the siblings.

Friday, August 17, 2007, 1:57 PM

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I am the mother to a beautiful litttle 4 year old boy who has down syndrome. I know this must be scary for you right now. We all want our children to be healthy and to have a life with as few struggles as possible. I turned 40 just before he was born. They did tests and told me that my numbers would be high because of my age but they were surprised when they came back normal. I didn't know until he was born. I didn't even see it in his face until they told me. All I saw was my beautiful son. I can't imagine my life without him. He is so joyful (and strongwilled). We have not had any serious problems but we take everything one day at a time.

I would get all the tests done and wait to see what the doctors say. Where do you live? I am not sure about online support groups although I am sure that there must be some. We have a great Down Syndrome Association in the city where I live. I think that most large cities have them. If you want my email I can give it to you just let me know. There is so much more I would say to you butI am not a fast typist. I understand your fear and I will pray for you. I am going to go and look for the Nation Down Syndrome Associations website. I will post more info for you later.

Friday, August 17, 2007, 2:00 PM

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2pm - do you have any other kids?

Friday, August 17, 2007, 2:02 PM

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Don't worry too much. I know it is devastating, I am pregnant myself, and I know how it must feel, but they can be wrong in these diagnosis. I have a person who works with who was told that they will have a baby with down syndrom, only to give birth to a normal child. I can't remember exactly , but in one of my pregnancy books, they say even when screening test says this, the diagnostic test is usually normal.

Good luck.

Friday, August 17, 2007, 2:14 PM

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OP here.

Abortion is out of the question, thus why I never mentioned it in my origional posting. I would never get an abortion and don't understand how anyone could. But if you wan to discuss that there is another post where you may express your feelings.

2:00 - I live near Anchorage Alaska. Thanks for the advice on the national website, I'll have to check that out. I'm waiting to hear from the specialist to schedule the other tests and am anxious to get them done to either confirm or disreguard the blood work.

1:57 - Divorce is highly unlikely also with my husband and I. We're sealed together and have already been through trials that most would get a divorce over (no, not infadelity) and I don't think a special needs child would break us apart. And as for my son, he'll grow up with this child (he'll only be 1 year older) so he won't even have to adapt, it will just be normal to him.

1:44 - any disabled child is a blessing. To be blessed with a soul that already has a spot with our heavenly father and who was sent here to test our worthiness ... that is a great blessing. I'm not worried for my self, I'm worried about my ability to adequatly care for this child.

Please don't all taint this post with your comments about religion or abortion, this is for me to find SUPPORT in my time of need. I'm not trying to start any fights, just clarify my beliefs so others who wish to offer some advice or stories of experience can do so to fit my situation. Thank you.

Friday, August 17, 2007, 2:32 PM

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I am heartbroken that it is assumed that a child with Down Syndrome would be thought of as severely disabled. I am now done crying and can tell you that my son is such a blessing to our family and it is not because he has down syndrome. It is because he is my son. He has 3 older sibliings who have not been negatively effected by this. They absolutely adore him. they are not ashamed of him but proud of him. He attends preschool and loves it. I don't focus on his down syndrome I focus on who he is. Our marriage has not been affected by our sons disability. He runs,swims,laughs,talks, andplays just like any typical child. I know that he will grow up and lead a wonderful fulfilling life. It may not be a fulfilling life according to some but it will be for him.

OP, Here is the National Association for Down Syndrome.

Friday, August 17, 2007, 2:46 PM

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My niece has downs - she is the most amazing adorable kid - she is just a kid, Her mom (and father, my brother) cannot imagine life without her. She IS a blessing, like any other kids. She is beautiful, smart and you fall in love with her instantly. Its VERY important for early intervention of different therapies - especially because of low muscle tone. Good luck, OP you sound very mature and it will work out, one way or another.

Friday, August 17, 2007, 2:55 PM

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OP I agree with you that the Lord gives children with special needs to families to that can handle them. I know a fam that has a downs little girl and while she did take a while longer to do all the normal kids stuff she is one of the sweetest girls I have ever met. I feel blessed just knowing her. You will be blessed either way. Many blessings to you and your family.

Friday, August 17, 2007, 4:05 PM

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I don't know anything about what you are facing but just wanted you to know that I care and I will say a prayer for you and your family.
Your beliefs and comments have encouraged me.

Saturday, August 18, 2007, 12:39 AM

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