What's it like having a baby with Down's?

[Gemmasmummy]

I'm 42, 11 weeks pregnant with my 2nd baby and have been offered a nuchal scan and counselling due to my age. Did you find the scan and counselling helpful? I have read all the threads on Down's but want to know what it's like to actually have a child with this condition. Are they more hard work than non-Down's children? What was hardest - coping with your baby or other people's reactions? My husband and I wouldn't terminate under any circumstances but I would like to be informed and prepared for what to expect.I understand there is a lot of negative press out there and I'm hoping isn't as bad as it's cracked up to be. If the baby doesn't have Down's, hopefully I will have learnt a lot in the process.

hello gemmasmummy, I have a 5 year old dd with DS, as well as 7yr old dd and a 3 yr old ds without anything.

I was really unprepared for dd2 having DS, we found out when she was a day old. I was only 24 and hadnt (sorry, computer wont let me do apostrophes!) even thought about the fact that this baby might not be the average "common or garden" variety. Anyway, I was really upset, and I think those first two years were the hardest - I grieved a lot for the child I was expecting to have, and found it upsetting to see babies of the same age as dd2.

I wish now I hadnt wasted so much time feeling sad - dd2 was the most delightful, gorgeous, and easy-going baby. People were forever commenting on how gorgeous she was, she was a much better sleeper than my other two and generally a lot more contented - she has always really enjoyed going out shopping for instance, whereas the other two considered the pushchair or trolley some kind of torturing device.

Dd2 is still a very easy-going child. From very early on she has been really eager to please and she loves helping out - she always unloads the dishwasher with me, that kind of thing. She is kind and gentle and just adores babies - she can spot one a mile off! Shes not passive or anything like that, she is just a bit more easy-going that my other drama queens, and unlike the other two she is great at playing on her own, she just takes herself off and plays tea-party with her dolls for ages.

Some things are hard - when she was younger she had a lot of medical problems, and dealing with all that was upsetting and draining. She also has hearing loss, and dealing with all that has been very difficult - it is properly aided now though so its not such a big issue anymore. She goes to the village primary school and they are fab, so no worries there.

Im trying to think of other things that are hard now - shes not been invited to some parties recently, and I suspect it is because some other parents dont want her there - that is hard, and I think it will happen more and more as she gets older. Thankfully she does have plenty of friends with more enlightened parents, so she does get to party lots, anyway.

I do worry about her adolescence - what will it be like for her if she has a crush on an ordinary boy, for instance? But then I worry far more about what sort of teenager my stroppy 7 year will turn into.

All in all, dd2 is a really delightful little girl. I feel very lucky to have her in my life.

Hi Gemmasmummy

What a great post. So wonderful to hear that you are so positive and lovely to know that you aren't in that horrid place where you don't know what you'd do. It must be so nice to know what you'd do if you are told that your child does have Down's syndrome. Good for you for wanting to find out as much as possible just in case.

What's it like having a child with Down's syndrome and is it as bad as it's cracked up to be?

well first of all I can do is tell you what it's like to have Charlotte. I don't really know what it's like to have a child with DS, I know that doesn't amke sense really but it kind of does to me. All I can do basically is talk to you about Lotbags. And is it all negative - pah - all negative my backside, it's pretty much all positive as far as I'm concerned and don't another mother whose child has Down's would argue with me.

The negatives - well I guess some people worry about the future. I don't. What's the point. Who knows what'll happen, how can I worry? I have the same, if not more worries for my other DD who is NT. If's, but's maybe's whatif's, no not for me. I live for today ad maybe tomorrow. What will happen to Lottie if DP and I die, well with any luck that won't be for ages and with any luck she'll be living semi-indepentantly with her own friends, lots of support and she'll have siblings and other family around as well. She'll be fine. The same as all the 60,00 other people with DS will be.

Learning difficulties - she won't give a shit that she doesn't know her 13 times table, why should I?

Other people's attitudes - not come across much negativity, if I do, fuck em, their loss. Lottie is a strong, independent, fisty littel girl and that will stay with her. Anyone worth anything will see who she is, what she has to offer and love her. Anyone who reacts negatively to her in later life, I'll teachher to be the bigger person, to turn the other cheek, and to do it with a smile. She'll be a confident strong woman, I know she will, she's her mothers daughter. And I'll always be there to give her a hug and tell her how amazing she is.

Relationships - she won't have her own kids but she'll have relationships and she'll be happy. She'll be a great auntie and maybe she'll be someone Godmother.

Education / work - she'll do whatever she wants to do. It'll be my job to make sure she knows that and her job to make she gets what she wants.

Day to day living with Charlotte now -
NEGATIVE - she doesn't walk yet aged 5 @ Xmas
POSITIVE - she will and it'll be a fab party we hold to celebrate.

NEGATIVE - hmmmm think I've run out of negatives

The POSITIVES-
She's everyone's favourite. Everyone wants to take her out for the day, have her overnight, have her round, sit next to her at school etc.
She is funny, fiesty, strong-willed, stubborn, naughty, cheeky, sweet, sensitive, caring and has the ability to touch people herats and lighten up their lives.
She's amde me a better person. I feel blessed and privilaged to be her mum, have met some amazing people and the people I knew before I'm closer to, all beacuse of her.

Is it hard - yes. Sometimes very hard.
Is it so hard that I wish she din't have Down's, No. Do I regret having her, no, never, ever, ever. Is it so hard that I can't cope, no, bring it on. Is it so hard that I feel I can't seehow I'll go on, no, not ayt all and she makles it all so worthwhile.

She's not hard work cos she has Down's, she's hard work cos she's my daughter and she's a proper little madam.

Comparing my DD1 with Down's to DD2 without, so far DD2 has been much more difficult to look after.

Feel free to ask ANYTHING you might want tp know as I have just rambled and rambled.

To summerize though Lotttie ROCKS and I wouldn't change a hair on her scruffy head.
I love her, unconditionally.

TC x

Just thought of something my DP said when Lottie was about 1 year old.

He was getting ready for work and she was sat at his feet playing with his shoelaces or something and he looked down at her and said "I feel sorry for everyone else". I said '"hat do you mean?" and he said "I feel sorry for anyone who doesn't have Charlotte in their lives. I go into work and look at all the other people in the office and think 'you poor bastards, you didn't have Charlotte around you this morning'"

Blimey-I haven't read two such positive and uplifting posts on here for ages-fantastic-has meade me smile on a crap day....

Just come back as am at work so just bashed out my post and read Geekgrrls post again slowly.
Great post as usual geekgrrl, much calmer than my mad ranting!

I very much echo what geekgrrl has said about the grieving thing. I was 30 and was utterly, utterly shocked. I didn't have a clue but the first time I laod eyes on her when she was a second old I knew. I grieved and shed many tears for the child I thought I was having. I'm glad I got over that quickly. I rememeber sitting there thinking 'right so when exactly is the world going to come crashing in around me? It isn't is it. This really isn't a bad thing' and I stopped waiting to fall apart and got on with enjoying being a new mum.

Edisvold will be along later (she's in Australia so) and she'll enjoy sharing her story. She has a beautifil DD, well she has 2 actually, but the eldest has Down's. Edisvold sort of expected that her baby may well have Down's syndrome, and well, she wasn't disappointed! Anyway, she'll have lots of her own to say.

I think we are united in that we have moments of it being hard and upsetting, but on the whole we are very, very happy mums who adore our children and wouldn't change them for the world.

PS - Geekgrrl you're so lucky your DD is easy going. I would never be able to use that line for Lottie!
LOL!

Never mind this thread being about DS-I reckon lots of us could learn a lot by following your advice and I know it sounds corny but just chilling out and enjoying our kids.

Geekgirl & TeeCee. Thanks girls, you've made me smile.

Gemmasmummy, congrats on your pregnancy. Enjoy it

Geekgrrl and Teecee you've just made me cry with your wonderful posts. I worry about all the possibilities that could go wrong with having a baby, and with all of these tests that are on offer DS is something that is worrying me right now but posts like yours just make everything less daunting and make me realise life doesn't end because your child doesn't turn out exactly how you expect.

Geekgrrl and Teecee, you made me cry too with your lovely, loving descriptions of your fabulous children. You have really taught me something here - I had an image of a child with DS being very high mainatenance and I feel ashamed of my ignorance. MN is just the best for teaching people about SN issues.
Good luck with the pregnancy, Gemmasmummy.

This is a heartwarming and genuinely inspiring thread. I just want to say thank you for making my day

Geekgrrl & TeeCee what lovely posts to read.You made me smile and cry (Geegrrl,the bit about not being invited to recent parties.....Bastards)

There is a little boy aged 5 at our music class with DS and at first my dd aged 3 was very wary as he gets very excited and is really enthusiastic!
Now he is the child she wants to sit next to and the one whom she runs around with.Its not the children its some of the parents, they are just so anal.

Well I was out and about yesterday - Melbourne cup morning tea and then off to see U2 in concert.

Boy where to start - to be honest in response to your question my first thought was no different to having any other child. You have your tough times, your amazing times, your quiet times, your joyous times.

As TC says we basically knew as well as one could without an amnio that our dd1 would have down syndrome. At 20 weeks they picked up her heart defect - told by cardiologist that most people who have this heart defect also have down syndrome. I said I would not have an amnio as it would not make a difference - this was our daughter and she would be born. Surprisingly - he agreed - no point in putting myself through it if it would not make a difference.

So whilst I still shed tears when the confirmation came - hard to know as it was not delivered in the nicest of circumstances - dd1 was an emergency c-section and taken straight to ICU. day 3 - hormones crashing, a little stressed - the doc drags dh and I into a corridor in the SCBU , opens dd1's medical records - points to a piece of paper ( which was her blood karotyping test) nods at me and shuts the folder and walks away.

Anyway - enough of that - our primary focus was to get her heart sorted - three stressful weeks and two open heart surgeries later - she was done - to look at her now - unless you saw the zipper you would never know.

We did have some practical issues eg dd1 was ng tube fed for eight weeks - four hourly feeds etc -very structured routine - think that was helpful - BUT on the plus side - she slept through from the time she came home at 3 weeks. ( fast forward 2 1/2 years later to her sister - who hardly slept through and was a very demanding baby - boy we learnt what sleep deprivation was real quick )

The hardest thing I hate dealing with is other people's ignorance and at times it gets me down when I think - bloody hell I have enough to do raising two cheeky little monkeys without bloody well educating the world too.

So - this is rather rambling - just putting what comes to mind.

At 4 - my dd1 attends mainstream kindy as well as an sn kindy, swimming lessons and therapy. She is adored and adores going to school ( sn kindy) and kindy. She has touched so many people - for her - the world truly is her oyster and there are billions of people out there to say hello to. Okay we have outpatient appts at the hospital and therapy sessions but other than that - day to day - no different to any other child.

She can be stubborn and she certainly knows her own mind, she can be cheeky ( hard not to laugh at!) she can be everything that any 4 year old will be - and then some.

She adores her 2 yr old sister - think dh and I come far down the pecking order. Conversely her 2yo sister adores her.

I had some pressure from GP and midwife when pregnant with no 2 ( different gp from no1) who felt I needed tests as surely I would want to know - I finally told doc that he was talking about my reality.

TBH when pregnant with dd2 - I was terrified as to care for a child without special needs - did not know what to do and was worried I would mess up. But she is okay so far

Now I am pregnant with no3 at 38. SO I am classed as an old mum and also have a history of already having a child with down syndrome. MY Aussie GP is fabulous - very much guided by what I want and think is best for me.

This time we decided to have a nuchal fold. Did not have it for either previous pregnancy and tbh I wished I hadn't. The genetic counsellor was mis or ill informed, judgmental and really down right annoying. I had to test and my chances improved from 1 in 58 chance of the baby having any of those conditions to 1 in 969. What helped us though is that we had already decided that there was no further more invasive testing that we would discuss. No matter what the NTS came back as we would not consider having an amnio etc. So that made the process easier iyswim - in that despite their pressure - even with a 1 in 969 result to have further testing - we could say no.

Something a friend said to me when we had our initial cardiac diagnosis was - her little girl could be struck down by illness or accident the next day - what would you do - take them back to the hospital and say sorry - this isn't what I signed up for.

Again - I feel I digressed.

To sum it all up - in looking at my two children - raising them is more the same than it is different and I would not change my world for anything. I adore my children and I have had amazing experiences since having dd1 that I would never have had. I have seen the best of people - usually from the unlikliest source BUT sadly have also seen the worst - but as TC says - who cares - they are not significant and all that matters is your children and your family.

The other thing you can do if you want further info is to contact the DSA - UK and they have various people you can talk to - dh found that very helpful. We also knew a family who had a young girl with down syndrome and I know for dh talking with them helped him learn more the reality beyond facts and fiction.

pic taken this year of dd1

Fabulous posts Geekgirl, TeeCee and Eidsvold.

(Glad to see you back around TeeCee).

Thanks very much, everyone. If the baby does have DS I know where to go for support!

Buda - I'm not really back babes, lovely ladies like Edisvold & Geekgrrl let me know when there is a thread like this.

And talking of threads like these, nothing makes me happier than to read that people feel good having read descriptions of our children but to read posts like bumperlicious's who says :

"with all of these tests that are on offer DS is something that is worrying me right now but posts like yours just make everything less daunting and make me realise life doesn't end because your child doesn't turn out exactly how you expect."

and venusinfurs who says:

"You have really taught me something here - I had an image of a child with DS being very high mainatenance"

Comments like that make me so, so happy. I can't begin to tell you how good it feels to 'hear' you say that.

Hope you feel a little more relaxed and informed about stuff now Gemmasmummy and can relax and enjoy your pregnancy.

As I like to say in these situations, no matter waht happen, what the outcome, everything really will be okay.

TC, I caught an episode of Doctors the other day and they had a storyline about DS and sexual relationships.. I thought they handled it really well..the father who kicked off about his daughter having rights (!) eg access to the pill if she wanted it, was made to look a right dinosaur

This thread is lovely

LOL at you having to admit you watched 'Doctors'
I don't really even think I know what it is tbh but how lovely they dealt with a storyline like that in a positive way

Feel very smiley all round after this whole thread

Lovely thread best of luck gemmasmummy
I was an older mum too and was happy to go for nuchal to be better informed about risk etc, but like you, would not have terminated if we had had a DS diagnosis

• we are off to France quite soon now, do you you still want some French picture books for Lottie? Can you CAT me?

TC, Doctors is marginally less embarrassing than Murder, She Wrote

LOL Bundle!

Marina - gosh yes, that would be lovely. See girls my little girl who has a limited vocab knows a lot of French words, can count to ten in French, as well as English, knows the days of the week in French, can say Bonjour, je maplle Charlotte, cava, au revoir' etc! Just wanted to point that out as we are bigging up the positives of having Down's syndrome.

Will CAT you now Marina

Sorry you are not really back TeeCee.

But glad you will pop in occasionally!