Down Syndrome Questions/Support

[workjw]

I have a friend that recently discovered her baby girl will most likely have Down syndrome.  She has asked if I could find some information for her and possibly some support groups online.  She doesn't have a computer at home, and doesn't really have the energy to go sit at the library searching for information right now.  I talked to her briefly today and she said that baby A is going to need heart surgery soon after birth, but she was at work and didn't have time to talk about it, so I'm not exactly sure what kind of surgery. 

I'm just wondering if anyone here could point me in the right direction of some good yahoo groups or other support groups or websites with good info.  I think my friend is totally lost, and overwhelmed.  She just keeps saying that she's never even known anyone with this condition, so how is she supposed to care for baby A when she gets here?  She is still very excited about the pregnancy, just scared and feeling lonely, and I'm really not sure how to help her.  Any info would be greatly appreciated. 

[askew]

There should be a local chapter in her area of these organizations, so she can talk to real people. 

http://www.buddywalk.org/

http://www.downsyn.com/resources.php

I know a woman in my early intervention program with twins where one girl has Ds and the other did not. They are a very happy family. She told me if she had known prenatally, she would have terminated. She found out at birth. I met her when the girls were 7 month old and she said Down syndrome is the best thing that ever happened to her family, and her Ds daughter is such a special shining light in her life, she can't imagine what she ever did before her. 

My DD has a genetic disorder which is rare, and I have often wished it was Down syndrome, as they have so many supports and organizations, you never feel alone. Rather you feel a part of a special secret club that no one knew the wanted to join. 

Have her read this as well. I loved it. 

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

[MotherWhimsey]

Is she going to be going to the hospital where I met you once? There IS a down syndrome support group in that area. My little sister has downs and they live in that city. I can ask what resources there are if you'd like.

[BeautyforAshes]

My 2 yr-old daughter has Down Syndrome.  We were absolutely shocked when she was born with DS and a heart defect that required surgery.  I would most definitely recommend downsyn.com--it's the best!  It has helped me tremendously on this journey.  There is a lot of great information and a wonderful support network there.  She also might want to check out downsyndromepregnancy.com, which is designed for people like her who have just gotten the diagnosis prenatally.  I would also be glad to talk to her if she is interested in talking to someone else who's been there.

[workjw]

Originally Posted by MotherWhimsey 

Is she going to be going to the hospital where I met you once? There IS a down syndrome support group in that area. My little sister has downs and they live in that city. I can ask what resources there are if you'd like.

Yes she is.  That would be so great if you don't mind!  Thank you so much!

Thanks everyone for all of the links.  I will pass them on to her.  BeautyforAshes I will definitely let her know that you are willing to talk to her.  Thank you!  If she's interested I will send you a PM.  I hope that she will, I think it would be really great for her to talk to someone that understands. 

Thank you again!!

[Arete]

My son, Davey, eight months, has Down syndrome and is doing fantastically well--he has never *yet* had any of the problems associated, and in fact is pretty much on track for "normal" development, besides being ADORABLE!!!  (Can you tell I love my little pork chop guy?)  It was a surprise to us when he was born, and, no question, a very difficult adjustment.  The website I like sometimes is einstein-syndrome.com.  Definitely check out the post "15 Things a New Parent Should Know."  Also, though it is controversial, (I agree with some of their theory and disagree with some) the Changing Minds foundation site is an interesting read.  Please let me know how your friend is doing!

[DaniTall]

Is there a mothering.com group for moms with Down Syndrome?  I have a 2 week old boy that was diagnosed a couple of days after he was born.  There are lots of local DS resources here in Denver but it would be nice to connect with natural/attachment parents of kids with Downs...

[Arete]

What a great idea!  There are so many issues (vaccs., diet, etc.) that take on a new significance for parents of D.S. babes.  I would love to see such a group form!!!

[DaniTall]

Does anyone know how tribes are formed?  I barely know how to post a comment.

[MyLittleWonders]

I don't think there is a tribe/group here, as of yet. There is Ds group at Baby Center that is very active; it is a mix between NFL type parents and more conservative (not sure best word choice here) parents. 

[DaniTall]

Thanks--what is Baby Center?

[MyLittleWonders]

Originally Posted by DaniTall 

Thanks--what is Baby Center?

I sent you a PM. 

[47chromosomes]

My son has Down Syndrome, and I highly recommend the Downsyn.com forum. link to the forum below. http://www.downsyn.com/phpbb2/index.php

[jtkkmom]

Here is a link to the Baby Center Down syndrome group:

http://community.babycenter.com/groups/a315/down_syndrome?



Baby Center also has a Down syndrome Pregnancy group. Here is that link:

http://community.babycenter.com/groups/a14515/down_syndrome_pregnancy?intcmp=SPGroups_SPPhotoGroupsRelatedModule_textlinks


I have a blog about my dd with DS:


http://downsyndromeupupupandaway.blogspot.com/

[columbusmomma]

I think this blog is inspiring:

www.kellehampton.com