Wednesday, December 14, 2005

What Would You Say ?

I got a call two nights ago from a friend of mine, lets call her Abigail. She was looking for the title of a book about a child with DS. I was curious, as to why she was looking for this title, as she really never showed an interest in Peanut or the DS. Abigail told me she wanted it for her friend who had had a "Down syndrome baby in Trenton, NJ". She said that the girlfriend needed some good reading. Instead of the book she had called me about I recommened another title, The new parents guide to Down syndrome, as it had more relevance and was quite abit more reputable. Abigail then asked me what she should say or do for her friend. The DS was a surprise and mom is very upset. So it got me thinking back to when I had Peanut. What would I have wanted to know about or have had said to me to make me feel better? My first thought was congratulations! You could not even begin to imagine the number of phone calls I got that sounded more like condolence calls then new baby welcoming calls. Let me tell you how depressing that was! It was such an insult to my family and to me.
The other thing I would tell a new parent would be that people are stupid. They say stupid things when they are unsure of what to say. That it is so important to treat people as if they are stupid and you need to educate them about DS and what it means. Without the education people mean well, but can really insult another persons feelings. So I guess the underlying theme would be to give the benefit of the doubt. Assume that people meant well, even if it might have come out wrong.
Ok, so now I pose a question to you: if you could go back in time to when you first found out about your childs DS, what would you have liked to have heard? What could someone have said, or did say, that would have been so helpful to you?

12 comments:

Sarahlynn said...

The Chicago and St. Louis Down Syndrome Associations have new parent support networks where new parents are hooked up with other parents of kids with DS who have been trained to support them.

I really enjoy doing this, though it's hard work. I relive my earliest emotions every time I make one of the initial calls.

What not to say: "God gave you this burden because you can handle it. I'm not strong enough, so God would never give me a retarded baby." Really, any variation on that idea is a good thought to swallow.

What to say:
Congratulations!
She's beautiful!
May I hold her?
In short, please treat my baby like anyone else's new baby . . .

Belovedlife said...

What a great idea! I think it is so wonderful that you are a part of such an important group. Offering help to new parents is so special. Kudos to you!

I agree with you about the burden issue...I hated when people told me that..
Thanks for sharing

Julana said...

I think I might have liked Martha Beck's Expecting Adam handed to me. Also, Angel Behind the Rocking Chair.

RNP said...

My daughter was born outside a hospital, a waterbirth, and I did not know she had DS prior to her birth. She had some very serious respiratory conditions that required almost the first month of her life in the peds unit (she was a so-called dirty baby born outside a hospital) so she didn't get the care she could of at the NICU.

In any case, I have written, discussed, and communicated many times how the initial "shock" factor is primarily due to how others react to the news.

It is so sad that in this day and age most medical professionals act as if it is unfortunate sentance for a parent. Friends and family general mean well, but often wear out "poor baby" and other unwanted statements. They don't mean to sound or act ignorrantly, they are often just so uniformed by our society and media that they are unable to understand what a true blessing our babies are.

I wish that the media focused on the positives, but I guess that good news just doesn't make much of a story.

Recently, my sister-in-law had a friend who had a baby that may have DS, I was never allowed to hear the outcome of the tests. I asked her to please consider allowing me to go see her at the hospital, not to overwhelm her, but to provide some reassurance that many of us never get.

Sarahlynn: The Hawkeye Area Down Syndrome Association in Iowa City,IA at http://www.hadsa.org/ is also very supportive and welcoming. I thank God I have connected with them.

They provided a wonderful new parent packet from Band of Angels http://www.bandofangels.com/. Unfortunately, there is nothing at all like this anywhere within driving distance to us now that we are in Michigan. Such a shame.... too bad I do not have the time and resources to get a group going.

So sorry for my long-winded comment Beloved Life. This is just one of those subjects I feel so passionately about.

Naomi said...

Althought I did get lots of congratulations cards, not many people called. The thing that meant the most to me was a phone call from an old friend that I hadn't spoken to in years (we do a couple of emails a year usually). The fact that she'd taken the time to call me was a huge thing.

I would have appreciated hearing from someone who had a baby with DS. My hospital and ped just gave me the number for a local support group but I always felt too overwhelmed to call. i wish someone would have just said would you like to talk to someone? give me your number and I'll pass it on.

I wanted somone to tell me all the "normal" things that babies with DS do, that I would still be able to go back to work, that he'd still be able to go to day care. That he'd smile and sit and walk and spit out baby food and all the other good stuff.

Belovedlife said...

Thanks for all the insightful comments. Everyone has their own unique expeirances, yet at heart we all kinda of wanted the same thing...acceptance, love and support.

Julana- I have heard so much about those two titles, but am embarrassed to say I have never read either of them...guess what I'll be buying this weekend.

Rebecca- I too have taken this issue to heart. I completely agree with you about the medical professionals...that is one of the reasons why I am going back to school to become a Physicians Assistant, perhaps I can help change at least one persons view.

Naomi- I agree about the normal things...I too would have liked to have heard about what she would do, not just what she may not be able to.

Sarahlynn said...

I too really enjoyed Expecting Adam by Martha Beck. I met with our pediatrician-to-be a few months before Ellie was born, and she (the pediatrician) strongly recommended that book. Since she has a daughter with DS too, she said and did all the right things.

But the genetics counselor we saw when Ellie was diagnosed with T21 (prenatally) recommended Choosing Naia and I really hated that book. I thought it was poorly written and extremely depressing, though otherwise I felt like I had a lot in common with the family the journalist author was following.

I haven't read Angel Behind the Rocking Chair. I'm going to look it up now . . .

Belovedlife said...

I agree with you SarahLynn about the choosing Naia. I too found it so depressing reading it in the bookstore, that I never bought it.

Tara Marie said...

Great post.....

I was blessed, as I heard mostly all positives:

'Congratulations'....'What a Blessing'.....'She is just perfect'.

I do have one friend who came to the hospital to see us and has never called or visited since [and we were best friends from the time we were 10] and the thing she said to me was by far the worse I had heard.

She was newly married [2nd time] and I asked her if she and dh were thinking about having a child [she had two from her first marraige and I knew a few Tx] She told me "No, because I know I couldn't handle having a baby like that"...pointing to Emma Sage in my arms. Needless to say, I was dumbfounded because all I saw in my arms was pure love and joy and a precious life.

If you talk to this person you can pass on our local group http://www.dsgnwnj.org or a great support group closer to her home http://www.dsacnj.org/ which are in Ewing, NJ which is right next door to Trenton. Also, please direct her to our e-mail as I am about 50 minutes north of Trenton and would love to meet them someday and could share all my books from WoodbineHouse.

Belovedlife said...

Tara Marie- I am sorry to hear about your old friend..she has no idea what all she has missed out on! You truly are blessed. I did send along those web addresses...I'll let you know how it goes, thanks!

Kim Ayres said...

Without a doubt, "Congratulations" would have been a great thing to hear. All I really needed to hear was that my daughter was a little girl just like any other - she would need food, sleep, love and attention just like any child. Anything else could be dealt with as and when it needed to be. Firstly she was my daughter, secondly she had DS.

It's the thing that I have pointed out to other parents and wish had been pointed out to us in those first moments

Belovedlife said...

Kim- good point. THat was one thing I find I still have to remind people. Especially in the hospitals..people all to quickly see the DS, but forget about the child.