Tuesday, June 14, 2005

Down Syndrome Help

An online friend recently asked me about resources for a co-worker who's the parent of a baby newly diagnosed with Down syndrome. I thought it might be helpful for me to copy my response here, in case anyone else ever has need of it:

My heart goes out to your friend. I know what I felt in her position and I wouldn't wish it upon my worst enemy.

That said, some people get very angry with sympathy. Some people seem to immediately accept their child's Down syndrome and don't want to hear "I am so sorry," from anyone.

When looking for helpful reference books, I'd recommend looking only at recent publications. Older things (1980's and before) are often incorrect, offensive, and as depressing as hell.

Anything published by Woodbine House is probably a great bet, especially this book: Babies with Down Syndrome.

That said, I haven't read much. I find it easiest (still!) to love and accept my daughter as she is without trying to embrace the whole diagnosis at once. Your co-worker may feel differently or want to read up on everything she can get her hands on.

Good Websites:
Uno Mas

Local resources:
Karen Gaffney Foundation
National Down Syndrome Society (search for local support groups or clinics)
In St. Louis and Chicago, the local Down syndrome associations have volunteers who call or meet with new parents. Your area might have that too; it wouldn't hurt to call and ask.

Treatment: The baby should have a good pediatrician who knows what to look for, which charts to measure the baby on, etc. And it's not too early to contact First Steps to start seeing a physical therapist. (Every state will have a different web page for First Steps.) It took me about 8 weeks to make the call, and I knew about the Down syndrome before Ellie was born. In the meantime, I did exercises with her myself and that was wonderfully helpful. I knew what to do because my mom gave me a great book by Valentine Dmitriev called Early Education for Children with Down syndrome (0890798605).

In my opinion, the most important thing you can do is to be as supportive as possible. If she needs to throw herself into work and not think about the baby while she's there in order to cope, that's OK. Otherwise, showing as much interest in the baby - without focusing on the Down syndrome - and wanting to hold him, etc. is great. Some people pull away when this happens because they don't know what to say. Others pretend that the baby doesn't exist, or they're scared of him. All that hurts.

If your co-worker would like to talk, please send me her phone number and I'll give her a call.


PPB said...

I think I smell a vocation.
you're very good at this calm, matter of fact advice thing.

Sarahlynn said...

Free advice from a professional! I am so flattered. But . . . what vocation?

Zoe said...

Just so you know, I think you're awesome.

Sarahlynn said...

Um, wow. Thanks, Zoe!

Belovedlife said...

Great post. If I would have know about some of these website and organizations earlier, I would have been so much better off. I only recently discovered UnoMas, What a wonderful sight. There are actually other people going thru the exact same thing I am going thru. You're a very special friend to compile all this info.

Piece of Work said...

Hi Sarahlynn, I used to lurk here and very occasionally comment a long long time ago but have since pretty much given up blogging. A friend of mine just had her baby diagnosed with Down Syndrome and so I've been looking for information for her, and this post is really wonderful. I'm going to visit her this weekend (baby was born a week ago, just got official diagnoses on Sat.) to see how she is doing. thank you!

Sarahlynn said...

Beloved Life, it can be so hard at first, can't it? And it's easy to feel bombarded with information, while lacking in time to just feel. Then, later, well, it's easy to forget the fear of the unknown, as it gradually becomes the familiar.

Piece of Work, welcome back! I hope that this is helpful. A lot of local chapters of the Down Syndrome Association have new parent packets; if your friend hasn't contacted them, it might be helpful to have a packet for her, or let her know that there's a call she can make to get more information.


You have a great blog i foun you some how on lin. Our son was born with esophageal atresia tef tracheomalacia bronchomalacia and laryngomalacia as well as down syndrome developed atalectsis of the lungs and also obstructive air way sleep apnea i hope to stay in touch and i will be back to visit as time allows me! http://www.kaylapearson.com

Sarahlynn said...

Kayla, thanks for finding me, and for helping me find you right back!