Advice for Mom for baby w DS

[briome]

A sweet woman I know just had a great HBAC. Her little girl has Down Syndrome. I would like some advice for me (I know your never susposed to say 'a down sydrome baby' right? it is the child then the condition???) Stuff like that on how to say things right and stuff. Links would be fine.

I would also like info on AP and DS for this mom and adjusting to having a special needs child. They are in the hospital now getting everything tested etc....

Thanks, I posted this on the pregnancy forum too.

[MotherWhimsey]

I think the best thing you can do is tell her congrats and mean it. Just treat her like you would any other baby, but understand that your friend may need more understanding. It's an overwhelming thing to find out your baby has something, but it's still your baby and you want to be told that it's the cutest baby ever, and you still want people to tell you how happy they are for you. So just be happy for her, and give her some leeway if she acts funny for a while.

[briome]

Oh I did that...Had no problem with that. NOW she needs more specific support and knowlege. The baby is a wonderful gift of course, but I know she would like some specific understanding. This baby is not like all the other babies that have been born to our group lately, it is a special baby with special needs and I would like to have more information then Mr. Noname walking down the street.

[AndVeeGeeMakes3]

My brother has DS, and I was his nanny from the time he was 3 months until he was 6 (I'm 23 years older than him). I participated in much of his early intervention care through local special needs organizations, and remain an ardent member of the DS community. He is one of the greatest joys of my life.

MotherWhimsey's right, and the first congratulations shouldn't be the last. However, I would counsel you to avoid using the stereotyping language such as "kids with DS are so sweet/angels/whatever." They're just as sweet, and as naughty, as any other kids. Sometimes both aspects are just writ large. Also, please try to avoid the common language of "meant to be," as in, "God gave you this child because you're so strong . . . . . it was meant to be." Sure, it was meant to be that this child was born into this family in that this child is that baby that came, but that doesn't necessarily mean anything relative to who they are. Down syndrome just happens, for lots of reasons. As with every challenge in life, it can be hard, and it can be growth-inducing. It's a lot in the attitude. Just don't feel sorry for her . . . encourage her.

Of course, there are often ancillary medical issues that come with a child with DS, like cardiology, pulmonology, and allergies. And there are, of course, learning delays and sensory issues.

I encourage you to help her find local support, early intervention services. Even if they don't want to be all that involved in the community at this point, it's a good thing to know about the resources. A friend of mine is the director of our local DS association, and she says that it is most often a friend or grandparent who is the first to contact outside resources, because mom is, at that point, pretty overwhelmed. So, you could do some legwork for her, assemble information. You don't have to make the call, but just, maybe, get together some brochures for her.

I'm also a HUGE fan of NDSA. They are very big on empowering families and people with DS to be self-advocates.

[2boyzmama]

http://enjoyingthesmallthings.blogsp...rth-story.html

Read this. It's up to you if you pass it on to the mom or not...she might not be emotionally ready, you can be the judge of that better than us.

One thing I struggled with when my son was born unexpectedly special needs, is the GUILT. The mind goes to some pretty bleak places when you have a special needs child, everything from "did I cause this?" to "do I love him as much?" to "can I handle this?" and "do I even WANT to handle this?"

The mom on that blog wrote honestly and openly about every feeling she experienced the day her daughter was born. She writes about how she was disjointed, how there was no immediate "head over heels fall in love", how she felt horribly guilty that she felt the way she did, and how eventually how she DID fall deeply, impossibly in love with her daughter.

Reading this might help you understand your friend's emotional state right now. She might be experiencing some of these feelings, all of them, or maybe none of them. Maybe the feelings will come later. Maybe she's suppressing them right now. But they WILL come, and she'll need friends to support her then. Friends who won't judge her for crying. I was afraid to cry in front of anyone, even my husband, because I thought it was a sign of weakness, I thought it meant that I didn't love my son, I thought I just had to suck it up. Instead I cried in the middle of the night while holding onto my son for dear life, praying, hoping, desperately wanting everything to just magically be OKAY when the sun came up. I became afraid of nightfall, when I knew all the emotions would come rushing back to me. I knew I wouldn't sleep, I knew I'd be alone without even the sounds of life around me.

Anyway... Get ready to cry when you read that blog! But it's so beautiful!

Oh, and like VeeGee's mama said, please don't say anything like "it was meant to be" or "you're so strong", etc. If that's true, then I wish I WASN'T so strong, you know? I DON'T feel strong! I don't WANT to be strong! Because that somehow implies that I deserved this, that my baby deserved it. Does that make sense?

And just like any new baby, offer to make some meals (or don't offer, just DO IT!), when you visit ask if you can put a load of laundry in the washer for her. Send your hubby over to mow the lawn without asking. If mom will let others hold the baby, direct her to go take a shower while you sit with baby. Or better yet, tell her to take a nice long bath, and you'll come get her if baby is fussing.