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Downs - how do i support my friend, her baby has just being diagnosed

(20 Posts)
carve123 Wed 17-Aug-05 17:29:56

Hi everyone, my friend has just had a beautiful baby, who has been diagnosed with downs. what can i do to be a great friend to help and support her and her husband - any advice ?

clary Wed 17-Aug-05 17:57:22

Carve, first of all you can say congratulations on the baby etc. i think a lot of people are so shocked that they forget to say that - just act as if the baby was NT ie in terms of card and present, delight over new little one etc.
Children with DS can access a lot of therapies eg home learning, physio, SALT etc, and the earlier they can do that the better. So it might be worth advisign them to check all that out.
Lots of other people on MN know more about this than me (eg the lovely Thomcat, my lovely sister etc) and I'msure will advise.
But you sound like a lovely friend, so just keep being that.

Nightynight Wed 17-Aug-05 18:57:47

I guess the thing to remember as clary says, is that your friend still has a beautiful baby. If it was my child, Id probably appreciate all the normal baby attention.

aloha Wed 17-Aug-05 19:17:09

Thomcat once said that the best people were those who didn't say 'Oh, I'm so sorry etc, but just acted the same as towards any other new baby - excited, giving presents, flowers, asking after the weight and cooing over the baby. Maybe after a while put her in touch iwth the Downs Syndrome Association if she isn't already. And Mumsnet!

carve123 Wed 17-Aug-05 19:45:26

Thanks already for the advice - actually the easy bit is the cooing as her baby is just gorgeous : ) but find a thread on MN would also help, i couldn't see one when I looked, is there one for DS ?

jules27 Wed 17-Aug-05 19:52:15

So true,aloha , i am mum to a darling boy with DS and i got so fed up of people saying sorry when he was born , it was sad that he had DS ,but he was still a new baby and i wanted the congratulations that i had with my daughter was born.You are already being a great friend by thinking of her and asking others the best way to go in the same situation. SHE WILL NEED MORE OF YOUR SUPPORT AS THE DAYS AND WEEKS GO BY ,WHEN THE ENDLESS ROUNDS OF APPOINTMENTS BECOME TO MUCH OR WHEN SOMEONE SAYS A CARELESS REMARK. (ooopppss shouting)Being a great friend when you have a child with SN is about all the things a normal good friend is; just you might be needed a little more often. Hope this helps and hope your friend enjoys her wonderful new baby..

Dingle Wed 17-Aug-05 20:19:14

I must admit to me personally struggling in the early days. Amelia had such a problem feeding it seemed like an immediate slap in the face! looking back now, I know many children can have problems, but I just didn't see it like that.I was also isolated from everyone, because we had to stay in hospital because of her feeding issues. I used to quiz DH, asking how people had reacted when he told them!
I hold my hands up, to not really "celebrating" in the first day or so. It was all just too much to take in I suppose. But after a few visitors had come and gone, it almost put me at ease.

Yes, I had a beautiful little girl, who everyone was going to adore, whether or not she had DS, didn't come in to it. By the time the blood tests confirmed the fact she had DS when she was a few days old, it was really like "well, so what!" we had already accepted the fact.

I think the hardest thing for me, was the not knowing, would she have heart problems, glue ear, mobility problems... The literature on offer just seemed so negative and daunting. If you put it in perspective, you wouldn't know those things about any newborn baby, but they just seemed thrust into our faces.

I would highly recommend a little booklet called "Just Kids!" it is very simply a book of photos and small snippets of likes/dislikes and achievemnts. Nothing overpowering, nothing like reading a medical dictionary, like some of the books on offer.

I have always loved Amelia to bits, for who she is and having DS is part of her. But at that stage in our lives, I just didn't know "who" my baby was. She is now a very happy, healthy and incredibly cheeky little girl, fast approching 4!

Treat the baby and your frind like you would for any other baby, but when the time comes, also make it clear to your friend that you are there for support when she needs it.

Sorry, for ramling on, it is obviously a matter so close to my heart.

love Dingle.xx

eidsvold Wed 17-Aug-05 22:55:36

as the mum of a 3yo dd with down syndrome - I can echo what everyone else said - act as you would for any friend who has had a new babe. Celebrate!!

PLUS

be there for her - lsiten when she needs to vent and rant and grieve as such - for she will.... go through the why me, it's not fair etc.

When she seems overwhelmed - ready with a hug.

Any practical help when needed.

Just Kids is a fab booklet.... in fact they are in the process of updating it.

You might like to contact the DSA at this stage for her and ask for any helpful information. THen when you think she is ready for it - slowly introduce it.

Read up on Down syndrome yourself..... will help you understand what she may be facing.

Here is the website of the prent group I belong to

here

if you click on the link to the left entitled 'new parents' there are some great links there.

ChicPea Thu 18-Aug-05 00:21:38

There was a thread about DS recently, say in the last 6mths, and I think if I remember correctly, there was a poem about children with DS and how special they are and how just because their world is different to ours doesn't mean they can't function in ours. It was beautifully written that it made me cry so I stopped reading it but won't forget it. You will find it if you look unless another MNer remembers it and does a link.

carve123 Thu 18-Aug-05 11:34:14

can't find the poem but found the link to the lovely video on the US website. If anyone can direct me to the poem I'd be really grateful : )

Davros Thu 18-Aug-05 20:11:03

I don't have personal experience unlike some of the mums on this thread. I agree that you should react and celebrate the new baby's arrival but I also think you should not ignore the DS. I'm not saying you should plonk yourself down and say something tactless or give her a pile of books and websites, just something subtle to let her know that you're there to talk about it when she wants.

Thomcat Fri 19-Aug-05 21:29:05

Carve, will try and find poem for you next, but first wanted to say if you want to CAT me (contact another talker) then please do so and I'll gladly post you some lovely mags etc written for and by people with DS.
I might have a spare copy of just kids and another similar thing.

Re yr friend, she may need some support but don't be too surprised if she doesn't. Having a bbay with DS is much like having any other baby, they don't do much, and are just very, very cute. It's later, when his/her walking and speech is delayed that she might need some more support, but then again, you've lived with your baby for so long by that time that you dodn't think much about it.

Is this her 1st child. If so, even better as she has nothing to compare the differences to.

I only found it hard at big social gatherings when me and my DD felt so different to everyone else and all her peers were toddling and then later running around and mine was still, is still, being carried. That hurts. Other than that, and a few worries about the future and stuff, she's the lucky mum of a healthy happy child, and should be treated as such. It's a time of celebration, so make sure you support her and do just that.

Stash any books / mags I send you until later btw, she won't need to see them yet. They helped me but it still upset me to see the handwriting of a 14 yr old and other little things, so she has to be ready.

The poem however is good to give her now.
Off to find it.

TC x

Thomcat Fri 19-Aug-05 21:36:02

Here you go:

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thomcat Fri 19-Aug-05 21:44:18

There's a follow-up to the Holland poem:

Celebrating Holland - I'm Home

A follow up to Welcome to Holland, by Cathy Anthony - a parent, advocate and Executive Director of The Family Support Institute in Vancouver

"I have been in Holland for over a decade now and it has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on when I first landed in Holland. I remember clearly my shock, my fear, my anger, and the pain and uncertainty. In those first few years I tried to get back to Italy, my planned destination, but Holland was where I was to stay. Today, I can say how far I've come on this unexpected journey. I have learned so much more, but this too has been a journey of time.

I worked hard; I bought new guidebooks; I learned a new language, and I slowly found my way around this new land. I have met others whose plans changed, like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many encouraged me; many taught me to open my eyes to the wonder and gifts to behold in this new land. I discovered a community of caring - Holland wasn't so bad!

I think that Holland is used to wayward travellers like me and grew to become a land of hospitality, reaching out to welcome, assist and support newcomers. Over the years, I have wondered what life would have been like if I had landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and, at times, I would (and still do) stomp my feet and cry out in frustration and protest. Yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too, and look closer at things with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts. I have come to love Holland and call it Home.

I have become a world traveller and discovered that it doesn't matter where you land; what is more important is what you make of your journey and how you see and enjoy the very special, the very lovely things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn't planned yet I'm thankful, for this destination has been richer than I ever could have imagined!"

aloha Fri 19-Aug-05 22:05:36

Sort of off topic but while channel flicking this afternoon - dd having marathon breastfeed/cuddle - saw an old episode of Chigaco Hope with a young actress with Downs Syndrome. The episode was as cheesy as you'd imagine, but the actress was very attractive and, I'd say, the most convincing person in it by quite a long way. I was impressed, I have to say.

Thomcat Fri 19-Aug-05 22:08:26

ahola

I met a mum last week who lives in Watford. her DD who's in her 20's has DS. Her DD lived in Brighton and was in a band, theyt had a photo shoot on the beach for their new album the week before last. Didn't surprise me but made me smile.

Thomcat Fri 19-Aug-05 22:09:52

oh and carve, tell your friend about mumsnet and if she wants she can email / call me to share positive stories, talk about things like disability living allowance etc etc.

aloha Fri 19-Aug-05 22:31:15

I can imagine Charlotte doing exactly that sort of thing one day, if she's anything like her mum and dad.

carve123 Sat 20-Aug-05 19:12:00

what brilliant support. I love the Holland analogy and will send it on now, plus would love to see the magazines you talk about, Thomcat. Will CAT you : )

Thomcat Sun 21-Aug-05 11:35:26

Hi Carve, I had a big sort out of stuff last night and have found some bits for your friend. My email is at work so will respond on Monday and get something off to you in the week.
The Holland thing is great isn't it, totally sums it up 100per cent.

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