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SN children

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Original poster

coming to terms with my son having downs syndrome

20 replies

my4delights · 29/04/2009 20:12

hi i am new to this site still trying to find my way around. i gave birth to my 4th child 6mnths ago who has downs syndrome. this was a total shock and i am still struggling to come to term with his diagnosis and what the future will be like. is it normal to still feel this way after this much time has past?

OP posts:

TotalChaos · 29/04/2009 20:14

hello and welcome to this board. my boy has different problems to Down's Syndrome (he has language delay and possibly autism). The future and uncertainty is a huge issue, I really think it is completely normal to be worried about this at any time, there isn't any time limit on it!

mumgoingcrazy · 29/04/2009 20:25

Totally normal, I've known about DD2's sn for a year now and I'm much better now than I was, however I still get choked sometimes talking to people about it and I still cry about it too, just not as often. It gets better, and believe it or not there are pluses. DD2 has taught me so much, and her sn makes her who she is.

As TC said there's no time limit on it.

Welcome by the way, keep posting on here the mums on here have helped me out so much.
xx

amber32002 · 29/04/2009 20:27

Hi my4delights, welcome! Congrats on your lovely 6mth old!

Yup, tis normal to feel what you're feeling. But you're amongst friendly people on this board who know what you feel like, or can make a darned good guess at it.

I'd love to hear about him - what's he like, what news have they given you so far? Are you in contact with the charities and support groups for parents who have a child with DS?

Anyway, have a 'virtual cuppa'. I think you need one...?

vjg13 · 29/04/2009 20:29

Hi, I think it is REALLY early days for you and totally normal to have your feelings of shock. My daughter has global developmental delay and is now 11.

Try to just enjoy some time now getting to know your beautiful new baby!

madmouse · 29/04/2009 20:30

only six months!! sweetheart give yourself some time! My ds (brain damage resulting in mil cerebral palsy) is 15 months and I have only just started processing things now the immediate storm has calmed down. You get the shock of downs and you still need to do the night feeds and the nappies too, plus the actual problems caused by downs (feeding?) so it is not as if you have spent the last six months sitting still and contemplating have you?

devientenigma · 29/04/2009 20:38

Hi, it took me around 8-12 months to come to terms with mine and even then it was hard. My son has down syndrome among other problems. Probably like yourself I found after he was born and after they found his heart condition. I know it's easier for me to say don't even look ahead enjoy what you have now. My son is 8 years old BTW. Enjoy him as a baby, just as you have any of your others. I now feel the bond I have for my son immense although in the beginning difficult. HTH.

fizzyanddizzy · 29/04/2009 20:39

Hello. I also have a 6 month old with Downs syndrome and I am still very much coming to terms with it all. I tend to have good weeks and very bad weeks. The good weeks are when I focus only on the here and now and the bad weeks are when all I can do is think about the future ( have started to think as I type so will stop this sentence now!).

I have only recently started to talk at all with other mums who have children with DS and that is only by discovering this site.

The emotions, thoughts, behaviours... (and at this point I am still talking only about me - let anyone else in the family!) are just too great to go into. One thing though, my son is our 3rd and I do strongly think and feel that like in your situation, it is a good thing that he is the youngest.

You are not alone.

Original poster

my4delights · 29/04/2009 21:13

thank you for everyones support it really makes a difference when you don't feel bad about the way you are feeling. my little one is doing really well no real health problems just the typical runny nose which is a bit of a pain but livable. he is breast fed which is apparently really difficult to get established with a child with ds. he started sitting up at 5mnths and now gets up on his knees trying to crawl. he says ma ma and da da plus all the normal baby noises. i really want to take this positive start as a good sign for the future but things just seem too good to be true with all the problems he could have faced so far.

OP posts:

Peanut08 · 29/04/2009 21:44

Hi my4delights, I'm also new to the board and have a 7 month old baby boy with DS. What you're feeling is compleatly normal. It can take a while to get over the shock and mixed feelings that come with finding out your child has a been born with a disability I'm sure you'll get lots of help and support on here everyone is lovely and your DS sounds a determind little fellow!
Also wanted to say congratulations on BF your LO you must be really proud

Saint2shoes · 29/04/2009 21:48

my4delights welcome to the sn board.
you have made me feel all broody
my dd is 14 and has cp.

moondog · 29/04/2009 22:10

Hello My4 and welcome.
He sounds like he is doing great!
One of the most helpful things yuo can be doing with him is to use signs with speech. I'm a salt and have seen children with DS (whose parents do this from an early age) make wonderful progress.

This company do lovely dvds you can follow at home. Not necessarily aimed at kids with SN but of no matter. Baby signing is massively popular with all kids at present (I run baby signing classes and they are oversubscribed everytime we put on a course).

Your baby is an individual and no reason for him not to have an extrememly bright and fulfilling future. I work with many peopel with DS, lots of whom have their own homes, jobs, boyfriends/girlfriends. ( I must add that the person with the neatest handwriting I know has DS.)

Lovely story recently of a man with DS who has just graduated from university and is working as a teacher.

The future is there for you to make of it what you will.It can be bright and wonderful and I'm sure it will be. You will make many good friends on MN.
{smile]

eidsvold · 30/04/2009 02:07

Yes it is - and years later you may also experience some sadness. I have a 7 yo with down syndrome. Sometimes - very rarely these days as she is such a little person in her own right that the ds does not seem so prominent iyswim.

I also found just seeing dd1 is a baby/little girl who was mine to love, cherish and raise rather than a label was helpful. I think we can sometimes get caught up with labels and forget the very real little person full of life and potential that is obscured by a word that gives no real indication to the very vibrant and amazing person who is your ds. Who is to say what his potential is and what his purpose is to be.

You know - who knows what the future holds for any of our children. I am a worrier and decided that I was doing no one any favours by being focused on that - I was missing out the wonderful experiences of now.

We knew before dd1 was born so that made it a little easier. We also knew families who had members with ds and so that made it a little easier.

If you want to ask me anymore I am more than happy to answer or to share more about dd1 and what she had been up to ( participating in school cross country last week).

sarah293 · 30/04/2009 10:36

This reply has been deleted

Message withdrawn

TinySocks · 30/04/2009 11:02

Welcome.
My DS is 4yrs and has a general developmental delay (severe language and social issues) due to brain damage.

I love my little boy so so much, but we are only human, and yes you will have moments of wondering "why me?", I still have those moments. However as time goes by, I have developed a very thick skin!!! And I have learnt to accept what has happened to him. And I am not being romantic here, but I am so proud of his acheivements so far.

slightlycrumpled · 30/04/2009 11:08

Hello and welcome to the SN board.

I have a five year old boy with di-george syndrome, which has many similar traits to DS and it did take some time to come to terms with. We didn't get his diagnosis until he was four so we had already got to know him as just himself iyswim, and I think that made it easier.

It helps me to remember if I am having a wobble that it is just one tiny part of him, and as moondog said who knows what he is capable of.

I would also say that makaton signing, (which we started rather late at nearly three) is fantastic.

BradfordMum · 30/04/2009 11:11

My friend childminds a little boy who has DS and I am amazed at how brilliantly he's doing. He's 15 months and cawling around pulling himself up on chairs. He is picking up sounds and trying to make words.
He is a charming little chap.

marmoset · 30/04/2009 19:15

Hello my4delights and congrats on your new arrival. I have a son with DS who is 11 and 2 younger children, including a baby of 6m who doesn't have DS and who isn't sitting up yet - well done your LO!

I've been thinking about our early years after another thread was started (hi Peanut08 and Fizzy) and now remember a good piece of advice I got at the time - grieve for the child that you thought you were getting and then let go. Having a child with sn can bring a family closer together and of course there will be challenges as there are with all children but you are not on your own.

He does sound as if he is doing really well. There is a wide range of ability within DS and lots of advice through the Down Syndrome Association and the Down Syndrome Education Trust.

ilovepeppapig · 30/04/2009 19:50

welcome to the board.

I have a dd with CF and got my diagnosis 2 years ago. I am still coming to terms with it. I am sure you will find lots of support here. i know i have.

lainey1802 · 30/04/2009 20:19

Hi my4delights,
I am so glad you have found this site, it's so helpful to have other people to talk to and ask questions about anything atall.
I hope you have a helpful health visitor who can put you in contact with other mums in your area as its good to have people close by who understand what you are going through. The Family Fund gave me a very helpful book years ago called "taking care" by Alison Cowen, they may still give them out, it may be worth contacting them to ask. My DS is 15 nearly 16 now and he was diagnosed with a rare neurological condition at 5 months old, its a long road that you have to travel on but with computers nowadays you will never be without someone to talk to.
Good luck with everything

marmoset · 08/05/2009 17:19

Hello my4delights - just wondering how you are getting on? Have you seen the 'Hello' thread started by lebel recently - another mum with baby with ds? Lots of messages - maybe see you there?!

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