can i have a chat with someone about down syndrome please........

[smeeinit]

crap title sorry!
my uncle and his wife have a new baby girl (dd2),they found out shortly after birth that she is downs,obviously they are shocked and coming to terms with this as any parent would.had they have known before birth they wouldnt have done anything different and she will be loved and cared for as any child is.
i kind of want to know from other parents who have been through this how you feel at this point?
i know you cant generalise and everybody is different but im trying to understand how they must be feeling coming to terms with it.

Have no experience of this myself smeenit, but India Knight has a special needs section on The Times Online that parents post stories on. Might be something on there.

I am sure someone will come on here and talk to you about it.
I should imagine they are in shock. and greiving(sounds odd but you greive for the child that would have been)
I don't have a child with ds but one with cp.

Agree with 2 shoes- any disability comes with a sense of loss and grieving for the child you imagined, realising you have a child who has Downs Syndrome would be a rollercoaster for most parents.

keep bumping, Thomcat, HeadGirl, geekGirl or one of the toehrs may be along soon- and eidsvold is often here later (she's subject to antipodean hours!)

you are welcome to contact me off list [email protected] - i am not online this evening or tomorrow though

Sharon x

I've not got experience of Downs Syndrome/special needs shortly after birth, so it's not quite the same, but my experience of having a child with special needs is that you feel the rug has been pulled out from under you - that all the assumptions you make about their future were just that - assumptions.

thnaks everyone,so i can expect them to be going through a grieving process at the mo. thanks for your replies.

bump

i realise this is a tough time for all - just a little aside - she isn't downs - she just happens to have down syndrome - it really isn't the sum total of this wee girl -as you will learn in time . If you have a look at my profile you will see pics of my dd1 who was born with down syndrome. Some baby pics and her latest pics - she is now 5 yo.

They will be grieving as they have had a loss - the babe for whom they dreamed and planned for is not what they expected and so new dreams and plans must be made BUT we need to farewell the old ones iyswim. They will be in shock, they will be angry, they will be upset, they will even go through a phase of blaming themselves.

what can you do?

first and foremost - whatever you would do for anyone who has had a new babe - celebrate the amazing new life that has arrived. Celebrate with her parents for being parents of another gorgeous girl.

perhaps contact Down Syndrome Association UK - they have fabulous phone support as well as send out new parent kits. I think you could seek out information for them - something they may not feel ready to do but you can juse have it ready for them.

be there to listen - not to comment or judge or anything - whatever they are feeling is what they need to be feeling at the time. Just be a shoulder to cry on and an ear to listen.

Practical help - in whatever form you can manage - will face some tough days ahead.

I am only sharing what I have witnessed as a new parent support person - unlike most people we knew before dd1 was born and having had positive experiences with families who had children with down syndrome it was not a huge shock - that is not to say we did not have to adjust our mindset and dream new dreams for her ( such as olympian sprinter - she can run like the wind, rather than neurosurgeon) For us - she was our babe and was to be born - as you said for your niece.

I agree with all Eidsvold has said - particularly about getting your head round the fact that this little one is not "a Downs". She's a baby girl, who has Downs Sydrome. This might sound like quibbling over word order, but is SO important in how she's thought of.
Also, in the early days, the fact that my DD3 had DS was virtually all I knew about her. But that aspect very quickly became just a part of who she is. Nowadays, I would say her main characteristics are a fantastic sense of humour. And extreme greediness. Which she does not get from me
One of the most helpful things in the early days was meeting other families who had a child with DS, and were just getting on with life - I would highly recommend doing that. All the best to you and your family.

thanks for your replies everyone.
just to clarify to you,particually eldsvold and headgirl, i do find it slightly patrionising taht you would think that im looking at my new cousin as being just a downs child??
she is my cousin,my uncles child, first and foremost,the fact that she has down syndrome is part of her just as my curly hair is part of me.
she is a gift to our family just as all children are.
maybe i worded my op wrongly.

No offence meant at all Smeenit, but the thing that jumped out of your OP to me was the phrase "they found out shortly after birth that she is downs".
I wish your little cousin well, and she is lucky to have you looking out for her.

yes i think i may have worded my op incorrectly!

Whatever .
You'll start picking people up on it yourself now you have a relative with DS! Anyhow, how is the little one, is she doing well? The early weeks are tricky, finding out if there are any major health probs. Thankfully my DD3 escaped cardiac probs, which as others on here can tell you, are very frightening. She was, however, in special care for 2 weeks cos of a chest infection.

thanks for asking head girl,shes doing ok,is still in special care recieving oxygen and food,shes not staying awake long enough to take proper feed but is taking some from a bottle.
things are looking good,they say they shouldnt need to operate on her hole in the heart so thats a HUGE positive!!

p.s your daughters are gooooorgeous!

hi smeeinit - my little sister has downs and she is now 17. she is a typical teenager who is mad on tv soaps, pink, glitter, makeup, boys etc etc.

there is quite a big age gap between us and i do remember my dad telling me that my new sister had something called down's syndrome, but all that meant was that she might take a bit longer to do things than other babies. he was very calm and matter-of-fact considering this was only when she was 2 days old. my parents were immediately very pro-active in seeking out as much information about downs, and the support available to them and have always ensured my sister has been as integrated with her non-special needs peers as possible, as well as making friends with others with downs.
while i never saw them upset (which i expect they kept from me so as not to upset me), my overwhelming memories of my sister as a baby are of lots of games and fun (even though they were actually quite structured and educational games!)
now, she is due to finish college next summer and hopefully is going to attend here www.foxesacademy.ac.uk/

you sound like a fab aunty! am not sure any of that is any help to you, but am so proud of my sister i love any excuse to talk about her!

plus she's buying me lunch tomorrow

oh evilreturns, what a lovely post
"but am so proud of my sister i love any excuse to talk about her! " has bought a lump to my throat

oh thank you! i would bore the pants off you about her in rl, trust me. and i just know you will have the same "problem" with your new little niece! love and best wishes to you and your family

sorry - not niece, but you know what i mean!