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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. www.nads.org.

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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1:44-you make the rest of us who are pro-choice look bad by suggesting the poster get an abortion! That's a horrible thing to suggest to someone who wants a child! Down's syndrome is not something that will tear her family apart necessarily! I know several families that have a child with down syndrome and most are well adjusted, happy children (and one now an adult that lives independently!) who just need a little more direction than most!

Op-don't stress too much-like one poster said, the diagnoses are not always right. A coworker recently had a sister whose doctor told her there was a high chance her baby would have trisome 18 (a chromosonal issue, like Downs, only most children don't survive) and she found out later down the road that everything was ok. Your baby may be fine too!

And if he/she isn't-you'll be ok. Your husband will be ok and your child will be ok! You will love this baby just as much as any other and he/she will teach you things about yourself that you never knew! Hang in there-you have our support and I wish you the best!

Saturday, August 18, 2007, 1:50 AM

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I don't want to say to forget about the test results, but try not to think about them too much (I know, yeah right). I didn't even take the test when offered to me because there are SO many false positives, and if something was wrong I wouldn't abort anyways. By 20 weeks you feel the baby moving and you've bonded.
So please try not to worry, you are younger and the odds of down syndrome are smaller. And if your baby does have it, you will love him/her just as much, you are a great mom.

My thoughts are with you for a happy, healthy pregnancy and baby!

Saturday, August 18, 2007, 11:09 AM

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11:34 please say your comment was a lousy attempt at sarcasm...

Saturday, August 18, 2007, 11:39 AM

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OP...you are are doing exactly what you need to do. By doing early footwork and finding support you will provide a wonderful family life for your new child. There is a lot out there. Early intervention with developmental issues makes a tremendous difference for you child and your family.

There is the most wonderful book you should read. It is called "Expecting Adam" by Martha Beck. Martha was a grad student at Harvard when she found out (during her pregnancy) that Adam had Down Syndrome. Her book is uplifting and actually I would recommend it to anyone. Adam is a teenager now and he has two sisters. He was a blessing to Martha and her family. BTW she writes the coaching column for the Oprah Magazine so you can check her out there too.

Best wishes to you. You sound like a great parent!

Saturday, August 18, 2007, 2:07 PM

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OP, please don't worry about the blood tests. Like another poster said, these tests have a HUGE rate of false positives. I had my first baby at 40 and my second at 43 and refused to take any of the Downs screening tests -- no triple/quad screen, no amnio -- even though I knew my risks were huge. Both my babies turned out just fine. The ultrasound will tell you all you need to know, so wait for those results. God is giving you the baby He wants you to have, and it sounds like you're a wonderful mom who will welcome this child with unconditional love. I'm sure your older son will do the same. You're in my thoughts and prayers today.

Saturday, August 18, 2007, 3:06 PM

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11:34 - you are evil and VERY naive and misinformed. luckily, the mothers of the disabled children know this about you and wont take it to heart . where do people like you come from??? maybe your mom had a few too many glasses of wine during your brain development.

Saturday, August 18, 2007, 4:07 PM

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