Advice for Mom of baby w Down's

[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 guess I'll post this on the special needs forum too.

[MissMorgan]

I have just started reading "The Baby Book" by Dr. William Sears and Martha Sears and so far from what I've read they include some information their on son born with Down Syndrome. They write specifically about attachment parenting a baby with Down Syndrome and I think it would be a good read! (
They say don't ever express sympathy for someone that has a child born with Down Syndrome - something that devalues the baby and the parents. I agree with this as it seems like something easy to say when you don't know what to really say at all ("Oh i'm so sorry!") but when in reality these children amazing and precious gifts!

[Taylah]

http://www.txddc.state.tx.us/resourc.../pfanguage.asp

This is a guide for speaking to and about people with disabilities that I found and followed while doing writing for my last job. Hope it helps.

[briome]

Oh Yeah, never sympathy... Got that part down! No problem.

Does anyone know a site for parents of DS children or anything like that?

[RedOakMomma]

reading this might help you:

http://enjoyingthesmallthings.blogsp...?commentPage=8

This is a birth story (plus blog/journal posts in the following weeks) of a mom who had a baby with Down Syndrome. It was a surprise.

I think it's a pretty honest description of how it feels to find out your precious baby has special needs. To be very honest (I'm a mom to special needs kids, too), I find her quick bounce-back a little too good to believe, but I understand that these things go in stages. You can't handle all the grief at once, and there are big, wonderful moments of joy and happiness along the way.

I don't know if your friend is experiencing the stages of grief or not. They're very common after a SN diagnosis. However she's reacting, don't judge or second-guess her. Everyone's reaction to the news is different.

My advice would be: Love up the baby, love the mom, and be there to support her. Don't offer advice, because often things are said in well-meaning advice that stings and stings for months or years. Just be her friend, be her support, and cuddle up that beautiful baby. If she does push people away, try to stop in and show your support. Just be there for her, and don't go away. I had a lot of friends drop off the map in the months following my sons' births...I know it wasn't done out of hurt, just awkwardness on their parts, but it hurt so much. Being isolated and alone only makes it worse.

Best of luck to you. You might also get some good advice if you post in the SN forum. The women there are amazing.

[briome]

I already read that, it is wonderfully written. I ironically sent it out on an e-mail list my friend is on a few weeks before she gave birth too. What a sweet mama and baby girl!

[PuzzlePiece]

Be a friend -

I agree with everything said. Celebrate the birth as you would any other. Follow your friend's cues. The parents will have good days and bad, like with any other child.

As baby grows, support parenting strategies and methods that may not be AP, but are right for THIS child. (That should go for non-Down's too, right?)

My brother has Down's and has thrived. I'm pregnant with our first and the future Uncle is thrilled!

[2boyzmama]

Originally Posted by PuzzlePiece

I agree with everything said. Celebrate the birth as you would any other. Follow your friend's cues. The parents will have good days and bad, like with any other child.

As baby grows, support parenting strategies and methods that may not be AP, but are right for THIS child. (That should go for non-Down's too, right?)My brother has Down's and has thrived. I'm pregnant with our first and the future Uncle is thrilled!

YES to this!!! You'd think it'd be self-evident, but it's apparently not.

I have had to adjust my parenting style and preferences for my special needs child. I have had to utilize mainstream medicine much more than I ever thought I would. I have had to "let" the dreaded "government" into my home (early intervention services), put my child on registries, "label" him, etc.

[MySunflowerBoys]

Deja Vu!

I remembered replying to a similar question once before and posting several links. Here's that thread: homebirthed baby has Ds.

I second the advice given above, baby first response to the birth & congratulations are in order. I hope your friend's baby doesn't have too many medical hurdles to overcome and they can get home to have time to bond together.

[AndVeeGeeMakes3]

I posted my response here.

[47chromosomes]

I should think if you are excited for your friend, and you show interest in her babe as if there is nothing different, than you are doing well. I am jealous of your opportunity to snuggle that baby! Awe, what an amazing little person she must be.

If she would like a place of support specifically for parents who have children with Down Syndrome, then a wonderful site called downsyn.

I am glad that your friend has support in you. It is really hard readjusting life to include a Down Syndrome diagnosis, but the dust will clear. It is a wonderful ride.

[AndVeeGeeMakes3]

I know what you mean about "nothing different," but I have to kind of disagree. There IS something VERY different here -- something that does require some action, a new learning curve, all that stuff.

It's such a fine line. I know that people mean well (really well) when they tell me that "there's nothing all that different about VeeGee." But, it sometimes feels like it's minimizing what I'm going through. I DON'T want a pity party, or a lot of drama (ick). But it really is nice when someone acknowledges that this is hard, really hard. And scary, particularly in the beginning.

This may seem like a weird analogy, but, here goes. You know when your child hurts themselves and there's a whole bunch of blood? It could mean stitches, it could mean doctors, etc. etc. Well, you don't say that there's nothing wrong. And you don't start freaking out either (well, you try not to, right?). You summon your strength and, as MotherWhimsey put it recently, "put on your big girl panties," and get moving. And, then, you find a minute to go cry. Weird balance, and I think that's what a lot of mothering a kid, any kid, but more so a SN kid, looks like. So, being the friend that doesn't overreact to the crying, or to the stoic-moments, who just rides the ride with her, I think is the best thing you can be.

And, very small quibble: it's Down syndrome, not Downs or Down's. No big deal, just pointing it out since you asked for language stuff.

[jondee0]

I agree with celebrating the arrival of a new baby; issues or not, diagnosis or not, this is a new life, worthy of celebrating!

I would add, though, that I really needed people to acknowledge that my life had just taken a very, very unexpected turn, and I didn't feel particularly blessed or lucky. It was very helpful when a friend simply asked, "How are you doing with all of this? I imagine it's not what you expected", without displaying pity for me. While I didn't want sympathy and a litany of, "Oh, I'm so sorry" from friends and family members, I did want permission to talk about the vast array of emotions I was dealing. When no one opened the door for that kind of discussion, I felt kind of guilty for even feeling that way.

I know some moms who flowed so smoothly into being the parent of a child with special needs that you wondered if they just felt born to it. But most of the parents I've met over the past decade had highly conflicting feelings, and most went through cycles of the stages of grieving. It's good to have friends who can support you through this.

Joni and kids, incl. Michaela , 13, with a funky spinal cord, and Gabe , 11, w/Down syn. and autism