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please could anyone tell me about having a child with downs syndrome?

(16 Posts)
pregnantpeppa Fri 02-Oct-09 21:05:49

My lovely SIL has just had a baby girl diagnosed with downs syndrome. It was not picked up on any ante natal tests. She's a bit all over the place, has anyone got any experiences they can share about what life is likely to be like?
I am struggling with what to put in the card, obviously I am going to say huge congratulations on the lovely baby girl, but cant think of the right wording to mention the downs, don't want to ignore it, but don't want to say I'm sorry or sympathise too much, I think because its hard to say without kind of implying the baby will not be so much loved as if she did not have downs. Have already spoken to my SIL but its much harder to put in words than writing. Not sure if that makes sense at all. Thanks in advance for any replies.

bramblebooks Fri 02-Oct-09 21:26:06

My mate has a little girl with down syndrome. She didn't know until a few hours after the birth.
This little girl is the light of our lives and I can't imagine life without her. She plays with my kids and is a joy, always happy, loving and full of personality. She is learning well at school, reads, writes and chats away.

Another friend has a little boy who is severely affected, and has other issues - autism, deafness. They have found their way through.

We none of us know what will happen in life for our children. My own little boy developed a life threatening medical condition 2 years ago and our lives will never be the same again. None of us know what will happen in life to affect them.

I wish your SIL and bro well. It'll be a terrible shock, but they will get through it. I'm sure that there are many support groups out there to help them.

fizzyanddizzy Fri 02-Oct-09 21:54:58

Hi *pregnant peppa*. Congratulations to your SIL. I have a DS who will be 1 this weekend. I didn't know until he popped out that he had DS and being all over the place is a good way to describe how I felt at the time. In fact even though I work with people with learning disabilities and know full well how great people who have DS are and how good their lives can be - I didn't cope very well with the news at all.
Because lets face it her life has suddenly been turned upside down just because something has happened that she wasn't expecting.
I didn't want to talk to or meet people who had children with DS at the time, I didn't want peoples pity, I wanted to know I would still have the same friends / family - that people would accept and love my DS for who he was.
One year on and life is much better. My DS is ace - wouldn't have him any other way!!
Right now, your SIL is probably in shock still but if she has any questions, wants, needs anything - I (and there are plenty of others here ) would be more than happy to help.

peanut08 Fri 02-Oct-09 22:06:43

I have a DS with down's who is fantastic and loved to bits by all his family and friends.
I found out when pregnant so had time to get my head around things.
I'm guessing your SIL is probably still in shock and maybe grieving the baby she had imagined. She will need lots of support through this process but will make it out the other side and as you said she still has a beautiful baby and needs the same congratulations and fuss that most new mums enjoy for their LO.
The down's syndrome association do a guide for family and friends which may helphere. Congratulations on becoming an auntie smile

lotspot Sat 03-Oct-09 00:51:35

i dont have first hand experiance of raising a child with Down's Syndrome, but i work with adults with learning disabilities, and many of them have jobs they really enjoy, and live atleast semi-independantly

I (highlighting here how much i need to get a life ) follow this blog: - they have a daughter with DS, and there are some posts where the mum talks about how she grieved the baby she had planned for, and how she felt when she found out her baby had DS - a real insight into how you SIL might be feeling if you wanted to have a look

devientenigma Sat 03-Oct-09 06:50:03

Hi PP, she will be all over the place for a while. I think it took me at least 8 month before really coming round. I also found out after birth after they found a heart condition.
I definatly think you should read the leaflet peanut suggested, you can download to read or print. You could also take a look at the other stuff on their.
Just remember she's only a baby, differences don't seem to be an issue at first unless other problems coincide.
I remember getting my mam to phone around everyone to let them know I had the baby and to tell them he was downs. A few friends did stay away though some couldn't wait to meet him.
1 of my friends also lost a child at nearly 5 year old with asevere heart condition so was dreading telling her. She said she would be fine although when he goes into hospital for anything she is unable to visit.
Anyway sorry for the ramble.
Congratulations to you all.

devientenigma Sat 03-Oct-09 06:52:41

sorry just thought I would add my ds is nearly 8 and is at the severe end with plenty of other diagnosis/conditions. Whereas my niece is at the more capable end of the syndrome. So there's differing ends of the scale in the 1 family.

devientenigma Sat 03-Oct-09 06:53:52

that was meant to be nearly 9. sleeping is not 1 of ds good points. I have been up ages already and feeling it now lol x

linglette Sat 03-Oct-09 11:55:57

for the card: "I'm glad she has you and BIL on her team" - or perhaps just congratulations.

For face to face (if a serious moment comes)"I realise that there will be some extra challenges and I've got total confidence that you will rise to them".

<awaits response of jury>

the second one is copyright one of the regulars' mother in law so if you do like it I can't claim credit.

FabBakerGirlHasHadEnough Sat 03-Oct-09 11:57:10

I wouldn't mention the DS at all in the card.

linglette Sat 03-Oct-09 17:42:16

yeah you're right fab - sorry.

pregnantpeppa Sat 03-Oct-09 19:51:15

Thanks very much for all the replies - I went with no mention of the downs in the card before I'd read this, and we just said something like "we're sure Baby will bring you all the happiness in the world"

Baby has hearing problems but they think heart is OK, which I know can be a problem. I have been reading the DS association website which are really helpful, thanks. I like the face-to-face confidence booster thanks of your MIL lingette. I think it is just the shock at the moment and coming to terms with it, as some of you have mentioned. I know she will be loved just as much as any other baby, and bring as much joy. Am so looking forward to meeting her, they are the other end of the country so we haven't been up yet and giving them a little time to get themselves together but they have my DH's parents there at the moment supporting them.

linglette Sun 04-Oct-09 18:48:01

I stole it from someone else pregnantpeppa but glad you liked it too blush

catkinq Sun 04-Oct-09 19:45:04

welcome to Holland? - not for the card but worth reading.

eidsvold Tue 06-Oct-09 04:36:21

from one who has a fabulous daughter with ds - on the card - congratulations on the birth of your beautiful baby girl. no more needs to be said. She is a new mother who should be congratulated on the birth of her baby. Welcome baby x to the world.

The rest - you have a lifetime to share. Someone linked to welcome to holland - it is very true - written by the mother of a child with down syndrome.

Also the suggestion to contact the DSA - UK is another fab one - just give them a call and a chat. Perhaps even ask for info for new parents - something you can pass on to your SIL. Just say you know she probably has lots of questions etc about down syndrome and you thought as she was taken up with getting used to being a new mum you thought you might help her with some info for her to read at her leisure - so just ask her if she wants it.

I am actually a new parent support person for our DSA group. I have done various hospital visits - meet wonderful but scared parents and of course gorgeous wee babes. We visit families - more often than not in hospital if that is what they want or at home. They are given a gorgeous wee teddy and some information for them to read at their leisure. I usually just put the info to one side and focus on the wee babe and the parents' they have years to digest info.

I think the focus for family is to just include and welcome that little one - a new life to be added to the family tree - another special branch to nurture and help grow to its fullest potential - whatever that potential may be. That is all I wanted from my family - accept dd1 and love her and support us as a family - help us bring her up as families do - the rest - therapy and medical care etc - we can take care of.

eidsvold Tue 06-Oct-09 04:37:14

welcome to holland

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