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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

downs syndrome

14 replies

JjandtheBean · 13/12/2009 01:14

hiya mumsnetters

Im a 21yr old mum to a 2yr old ds and 1 yr old dd,

I have a sister who is 4 and a baby brother whos just turned one,

My mums just got the results from her amnio test and her new baby has downs syndrome.

I dont know what to say to support her, shes a very strong women and shes had her cry and is now finding the positives, but i just feel a little lost and in all honesty her dp is a bit useless, hes failing to see how this will change there life!

No matter what this is my sibling, and i will love it and adore it as i do the others, if not more.

No idea why im posting really, just dont have anyone i can talk to!

any words of wisdom gratefully received! x

OP posts:

amberlight · 13/12/2009 08:34

Not sure I can manage wisdom, but I'm so pleased to know people with Down's Syndrome - they're marvellous and I see them as friends and colleagues, same as I see everyone else as that too. I won't say their lives are always easy, (and those of their parents aren't either) but 'easy' isn't always better than "gee, that was a challenge, but we did it together! What a triumph!"

The important thing is to allow yourself to be every bit as happy for this new baby as you would be for any other little one.

Just listen. Point her towards the right places, like the Down's Syndrome Association www.downs-syndrome.org.uk/ who can help provide the info and support that everyone will need.

And congrats - so many lovely little ones to bring joy to everyone.

sarah293 · 13/12/2009 08:57

This reply has been deleted

Message withdrawn

Original poster

JjandtheBean · 13/12/2009 20:20

thanks guys, ive had a poorly baby, nothing thats life long but several touch and go moments so i am happy aslong as little one is safe and sound!

Ive worked with 2 downs teens when i was in college and without a doubt they were the nicest people ive ever met, well all be fine we are a tough family, its just a huge shock!

OP posts:

saintlydamemrsturnip · 13/12/2009 22:06

It is a shock, but it will become normality and you will (I promise) as a family end up pleased that you have DS in your family. I have learned so much from coming into contact with people with learning disabilities (through my son). My life is far better for it and I am proud to now be part of that community.

Best of luck to your Mum.

bramblebooks · 13/12/2009 22:48

Two of my very good friends have children with downs syndrome. These little guys are fantastic and unfailingly bring joy to our lives when they are around.

Original poster

JjandtheBean · 14/12/2009 13:40

thanks so much for all the lovely comments, i feel so much better for just talking!

OP posts:

midori1999 · 15/12/2009 14:55

My DS3, aged 5 1/2 has Downs.

Honestly? It really isn't that different to having a child without Downs, other than a few hospital appointments, and any child can have those. I am lucky though that other than Open Heart Surgery at 6 months old and a persistant runny nose all winter, my son never really gets ill.

Obviously I want my son to develop as quickly as he can, but mainly I just want him to b ehappy, and he is. It is only others who feel he should be as 'normal' as possible. Well, hey, guess what, he's not 'normal', not in the way society sees it anyway. He doesn't care that he is different and I certainly don't.

What I find hardest is other, usually well meaning people, who will say things like 'oh, my cousin IS DOWNS' or 'Oh, but they're such loving children' as if it's all so sad and they need to point out what they think is a positive, or as if they think all people with Downs are the same and not individuals. My son is my son, he is not someone's cousin, or friends child, he is an indiviual who happens to have the same genetic condition...

Sorry, I have ranted a bit... but really, your Mum, her partner and their child will be fine.

SuperSoph73 · 15/12/2009 15:03

Hey Jjandthebean our youngest son is 20 months old and he has Downs Syndrome. We didn't know before he was born because we didn't want any of the tests as it would have made no difference to us. I can honestly say that our lives have been enriched since Sam came along.

I'm not saying that it's all plain sailing as our little one has physio, occupational therapy and other appointmemts most weeks, but that has become just another routine.

There is a DS-UK mailing list if your mum's interested. I joined it a few months ago and it is just brilliant for advice on all aspects of Downs Syndrome and for when you just want a rant or want to brag about what your little one has achieved.

Congratulations to your mum BTW

Original poster

JjandtheBean · 15/12/2009 22:39

thanks so much supersoph and midori!

its so reasuring to hear from you, and also im sorry if anything ive said has caused any offence

i just genuinely have no idea and obviously this child is a huge part of my life and i just needed to talk to anyone.

Weve now had long enough for it to sink in, and everyones fine, i went out and got a little gift as i did with the other two, this is no different to them after all.

My mums had some scans to check little ones heart and everythings showing up fine, another scan in january to double check, consultants at st thomas' were fantastic and said baby is very active and healthy.

Cant wait to meet the little bean now!

OP posts:

midori1999 · 15/12/2009 23:09

Sorry, I didn't mean you had offended me, you haven't.

It is so great your Mum has decided to continue with her pregnancy and I think it shows what a wonderful woman she is and how supportive her DP and family are. I didn't know my son had Downs prior to his birth, despite having al 'the usual' screening tests. I am glad as I am not sure what I would have done, tbh. My friend (who's baby also has Downs) was told something like 90% of mothers who find out they are carrying a child with Downs terminate. It makes me sad, and glad I didn't know.

When is your brother/sister due?

Original poster

JjandtheBean · 16/12/2009 19:59

may 24th! lovely time of year imo!

(her dp is a bit useless but thats a whole other thread, he supports her decisions though)

Ive been asked to be birth partner with her dp as shes concerned about baby being alone in scbu, so dp would go with little one and id stay to support her, will be a huge thing as we are moving in february to the midlands from suffolk where mum lives, but i was there when the others were born and this times even more important!

OP posts:

midori1999 · 16/12/2009 21:09

Have they told your Mum her babay will have to go in SCBU? I haven't heard of that before, unless there ar eunderlying problems. My son was even examined and discharged before anyone realised he might have Downs...

Original poster

JjandtheBean · 16/12/2009 21:48

no, no ones said baby will be in scbu, but it would be the only one in the family not to be, which would be nice, so we are being prepared!

OP posts:

nappyaddict · 21/04/2010 00:09

Just wondered if anyone has seen JjandtheBean about as I tried to CAT her and it said her name was no longer registered. If anyone knows how to get in touch with her can you ask her if it is OK to pass on her email address?

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