I would love to learn more about having a child with Down's Syndrome

[BrownPaperandString]

We have just been told that we have a 1 in 5 chance of our baby having DS.

We aren't going to go for a CVS/amnio as we wouldn't terminate.

We would love to learn more about what it's like having a child with Down's Syndrome to prepare ourselves really.

I apologise if my question has been phrased really badly in any way - it's my ignorance.

Thank you in advance.

[lisad123isgoingcrazy]

i personally dont know loads, but there is quite a few sites especially for children with DS that might be able to help you too.
There are some parents on here with children with DS who im sure will be happy to talk to you when they get here
didnt want you to have no reply.

[MiladyDeSummer]

Me neither.

There was a recent thread which I won't link because the lady in question was undecided, but it was very supportive and very positive.

I'm sure you'll get the same responses here. Welcome

[siblingrivalry]

Hi Brownpaper
Welcome to the SN board -and congratulations on your pregnancy.
I know this will be a worrying time for you, so you are in the right place for lots of support and advice

My dd is autistic so I am afraid I have no experience of DS,but there will be others along soon who will be able to help.

What I can say is that,as a parent of a child with a disability, life isn't always easy but it is never dull and I have the most beautiful and engaging daughter.
There will doubtless be a process you will go through if your baby has DS - as you come to terms with it and what it means to you and your family. I went through this when my dd was diagnosed, and the support I got on here meant so much.

Keep posting on here -I think it helps to keep talking.xx

[saintlydamemrsturnip]

Hi - there's a poster who visits occasionally now whose dd's DS was diagnosed (with near certainty although she also refused invasive testing) during pregnancy. Have a search on her name - eidsvold - you'll find lots of useful info as she has been posting for years.

Lots of other mums here with children with DS who will be along soon.

[asdx2]

Hi don't have a child with ds but have two with autism. Just to say my sister had a 1 in 4 chance given to her and refused tests because she wouldn't terminate and dn was born healthy and without Downs. You have a 4 in 5 chance that ds won't have Downs too. Congratulations on your pregnancy.

[Eliza70]

Hi, I have a DS with Downs. He is now six months and is a total babe! We didn't know he was going to have DS until he arrived and it was a massive shock. Lots of tears.

But he's just my baby now and we have so far just made minor adjustments to get used to him. We had a lovely doctor in the hospital when he was born who said that for the first year we should just get to know him the same way we had with our first child. In a strange way we prefer that he has Downs rather than a lot of other disabiliites, it's something that most people have come across or at least heard of, there are established treatment programmes, people know what it is etc and he will - hopefully - be able to lead a semi independent life, won't need 24 care etc etc.

We were at a soft play (boak) with my sister recently and all our kids were running about and I got a bit sad thinking 'will DS ever be able to do this?' a nanosecond later a little girl with Downs ran past obviously the gang leader of her group of friends, and then I saw a young boy totally confined to a wheelchair... made me think we were lucky.

I know some of the other ladies will be along soon and tell you what things are like as they get older.

If you have any specific questions go ahead and post them! And I'll try to answer them.

[SaliMali1]

Hello,
Although I do not have a child with Downs I do work with a little boy who has. He has just turned three and is delightful and fun.

He is however hard work at times but it is worth it.

He was born with a heart condition so he needed an operation when born.

He does not have ATM anywyas eye problem(s) which some Downs children have.
He does have hearing problem v common with childen with Downs.

He does not eat solids at this point but he does experement touching licking food etc this is his biggest problem I would say.

He is using Makaton sighns as speech is delayed, but he understands lots of language.

He is very happy, smilely,giggly child who is a joy to be around he is so sociable and whilst he is slower to reach milestones but he works hard and gets there.
He has a strong mum and dad who push him which I think is key.

PS congrats on your pregnancy

[Amester]

Hi,

Congratulations on your pregnancy.

I have a 3 year old dd who has Down Syndrome and a 7 month old dd who does not. We didn't know dd was going to have DS and it came as a real shock when she was born. I knew NOTHING about DS and even though I loved her from the minute I saw her I had so many worries and fears. I remember saying to my sister 'how am I going to cope' and she said 'don't worry i'll come round every day and help you'. It seems so silly now because far from 'coping' i've just loved having her.

She was such an easy baby, she slept through from the word go. I found breastfeeding quite hard to get going, mainly because she was so sleepy to begin with (I blame the Pethidine I was given an hour before she was born for some of that though) but I perservered and BF her for 14 months. I weaned her as I would any baby and apart from being a bit of a fuss pot now she has fully self fed herself since about 14 months and can eat any texture.

DD has always had very good motor skills i.e. rolled over at 17 wks, sat up on her own at 7 mths, crawled at 10 mths and walked at 16 mths. The biggest delay dd has is with her speech and at 3 she has only around 10 words but she knows around 50-70 signs (sign language). She does however understand most things I say to her so I think her speech will come its just taking a while.

If your baby does have DS you will find you have quite a few appointments in your life we see Paediatrician, speech and language therapist, Portage ( a home service to support development through play)and have hearing tests and eye sight tests.

Recently my dd did something adorable (a regular occurance ) and my mum said 'if you'd have known she was going to be like this you wouldn't have worried so much in those early say would you' and thats so true. My biggest regret is being so upset in those early weeks, because the last 3 years have been so wonderful. I don't know what dd's future will hold and I tend not to think too much about what may or may not be. I do still have some dark moments where I feel fearful for dd's future but I try and remind myself to live in the now and now is a very happy dd who loves life and I can only hope that will continue.

Sorry for waffling on so much. I hope that you enjoy the rest of your pregnancy and let me know if you want to know anything else.

[Spinosaur]

hello,
just saw your post. the Down Syndrome Association is a good place to start, they have information leaflets and a good website so check that out if you haven't already. Good luck with the rest of your pregnancy, take it one day at a time and be kind to yourself. Good luck. I am parent of 5 yr old with DS and he is fun but always sticky, he gets up early but gives me hugs and can blow raspberries for England.

[midori1999]

I have three DS's, aged 14, 9 and 6. The youngest has Downs Syndrome.

Having a child with Downs is different to having a child without it, but my older two boys have been hugely different to each other anyway. I do tend to take things for granted and just accept my son for who he is, not realising how different he is to other children his age, but my nephew is only 5 weeks older than my son, so when they are together I really notice the difference. However, I wouldn't change my son for the world. He has a wonderful, outgoing and bright personality and Downs is only a small part of who he is, although saying that, withotu the Downs he wouldn't be the same person, so I would never wish he didn't have it.

I couldn't breastfeed as my son wasn't able to latch on, but I did exlusively express until 3 weeks when my milk dried up. However, I now suspect this was due to poor advice more than anything. My son also slept through right from the beginning and in fact never once woke up for a feed. He did have two holes in his heart but these were closed by surgery when he was six months old with no problem at all, it is a fairly routine operation these days.

My son does go to a special needs school. We chose this as I felt it matched his needs better. His speech is pretty delayed, he can't have a conversation but can say loads of single words and has started using several words together when he feels like it, and he does sign too. He understands everything we say to him though and sometimes suprises us with how much he does know and understand. At times, I think we underestimate him.

Everyone who knows us loves and adores DS3. He has so far retained a childish innocence which is missing in so many children these days. That is made even more obvious by the fact my older two are mature for their ages. I think this endears people to him. For example, we decorated his room the other day and put new toys in, wall stickers on etc. DS3 saw it as he was going to bed btu went to sleep as good as gold, just like usual. In the mornin ghe always wakes before us and as he hear dme in the hallway he gave his usual 'hi Mum' and then opened his door, waved his arm at his room and gave a huge 'da, dah!'. Tiny thing, but absolutely wonderful.

[BrownPaperandString]

Thank you so much everyone for your wonderful replies. I have loved reading about your wonderful LO's.

I've been feeling a bit wobbly but I think it's more to do with worrying that there is something wrong other than that the baby might have DS - that they've picked things up that could be due to DS but could easily be due to other kinds of problems that are really serious.

I think that my main fear is not wanting to put a child through a life full of surgeries or loneliness or hostility etc but I appreciate that scans can't pick everything up. I just hope we're not being foolish not investigating further at this stage.

I'm also concerned because DH doesn't really like the first 2 years of a child's life - he finds it very hard and I'm wondering how it would be when those 2 years are essentially extended.

This is DCs too - Midori - how has it been with 2 older siblings and is everyone able to enjoy doing similar things at weekends and holidyas etc or is it a bit more difficult to do that?

[BrownPaperandString]

sorry - this is DC3...

[SaliMali1]

Brownpaper - Whatever happens your child will make you happy and will make you smile each and every day !!!

Yes if your baby has Downs it will be hard work but it will be so so so worth it. The little things, the pround moments will you fill you with joy for days and days.

I think that provided the child (like any child) is in a loving home then that child will be happy.

From what I gather from the child's mum he has had the operation on his heart and that is it.

He has regualr health checks for eyes, ears etc but day to day he is a happy happy little boy.

[saintlydamemrsturnip]

Hi Brownpaper - I have 3 children, in my case the eldest is severely autistic and has severe learning disabilities. There's a bit of an age spread (11, 8 and 5). We do a mix of things together and things apart. On Saturday all three boys are going horse riding together, but usually I take ds3 horse riding, whilst ds2 goes to Stagecoach and ds1 is at a playscheme. However, the kids I know with DS generally find it easier to fit in with the family plans as all the ones I know are far more socially able than ds1 (who is feral!).

I have a feeling (from observation and there may be other issues that I haven't thought of) having the child with SN being the youngest in the family can make it easier to manage all the children together- because the elder 2 are sensible. Now my youngest (NT) is 5 it's much easier than it was a couple of years ago as I only really have to hang onto ds1. DS2 and Ds3 can be trusted to do more or less what I tell them to. When the age range was 6, 3 and baby I had three children who all needed someone holding onto them making it harder. Had my autistic son been the youngest and my eldest been NT it should have been easier iyswim.

I don't think the first 2 years become extended as such - they're just different. DS1's language development for example is at a baby level, but he's nothing like a baby- he goes surfing and horse riding and climbing and on his scooter etc.

[SaliMali1]

Enjoy your pregnancy and your baby, what will be will be and if your LO has Downs I am sure you will be a great mum and do your best for your child and they will bring your family great joy.

[BrownPaperandString]

Hi Saintly - that's a very good point that you've made and I think you are absolutely right. I'm just wondering if it makes a difference that my 2 now will only be 4 and 2.5 when this LO is born . They're pretty sensible but even so.

Please can I ask all of you who do have a child with DS - when you say that 'it's hard' (but lovely etc) - what do you mean by 'hard'. What kind of challenges are you dealing with.

Also - I know that this is probably a really difficult and emotive question to answer, but if you knew that you had a second one on the way with DS, would you continue the pregnancy (taking it as red that the decision wouldn't be any reflection whatsoever on the child that you already have)?

[Eliza70]

Hi, for me it's hard in that my DS will always be 'different' to other children and I think that even things like going to school will be harder for me and DP as we will have to navigate a system that other people don't know about.

I try not to think about the long term, but obviously worry about what will happen when we die. It's like all the hopes and dreams I had for him before he was born are turned upside down and we don't really know what the future holds, but then we don't know what the future holds for any child.

We would like another child, but are apprehensive that they would also have DS. Our personal belief would be that if that did happen then we would have have to accept that.

[saintlydamemrsturnip]

Brown I know DS1 has ASD, but we had to ask ourselves the last question. He is more severely disabled than any child I have met to date with DS. He doesn't have the health problems that can sometimes accompany DS, but his LD's are very severe and his ability to access activities appears to be a lot more limited.

When we had DS2 and DS3 we talked beforehand about what we would do with any high test results and we decided we would have no invasive testing. We had nuchal with ds2 and bloods with ds3.

We decided no invasive testing partly because we could have terminated a child with DS then go onto have another with severe autism who would be even more disabled and also because I thought that going through a termination would screw me up a lot more than having a child with DS. That's obviously personal, but true for me. So we decided we would only terminate for conditions absolutely incompatible with life (such as anencephaly).

In our case I find 'hard' is mainly other people and society. Going out can be hard (in your case it probably won't be too bad because you baby will be in a pram/buggy/sling whilst your other two are really little- and that would be the case for an NT baby too. Summer holidays can be hard because ds1 loses his usual structure for a long time which makes him more anxious.

Dealing with services is hard because you constantly have to be on people's backs to get them to do their job. I see it as good practice for when my parents need me to help organise care for them etc!!! I guess most of us end up having to deal with social services etc at some stage of our lives, and I've had lots of practice They won't get any of their tricks past me!!!

[Amester]

Things I find hard:

DD's speech delay
Worrying about an unpredictable future
Worrying about dd going to school

When I was pregnant with dd2 I did not have any testing for Downs whatsover, it would have made no difference to me I wouldn't have terminated and I just didn't want to know. Not sure if i'll have any more children but I cant see i'd do anything different in future.

You asked about holidays and going out etc, DD1 has been abroad 3 times on a plane and away at least twice in this country too. She goes to all the usual b'day parties, play groups etc. DH and I regularly go out and my mum baby sits.

ps Midori - your ds sounds so cute!!

[SaliMali1]

From an education point of view the hard thing for the parents in my area is fighting for the right for the best for their child. My authoroty are buggers for giving out statments of special need.

[SaliMali1]

**for not giving statments of special needs.

[devientenigma]

HI, all I can say is start as you mean to go on. You will learn to go at your child's pace. You will cherish each accomplishment as and when and however small.
The only advice I could give right now is you don't know what method of travel or what road you are on until you are on it. Take each day as it comes. Seek advice as and when needed. I like to say don't get hung up on personal stories, keep an open mind.
I have a son with downs whose nearly 10, I found out he was downs after we found out about his heart condition after birth.
As with all syndromes etc there is such a huge spectrum of ability etc. I have found you can only get out what's in there to give. As you have already gathered my son is at the severe end and has a few more dx's.
HTH and anything else you want to ask, please do.
Lastly CONGRATULATIONS

[BrownPaperandString]

Thank you again for more replies!

You all sound like such lovely ladies. Having mentioned babysitting, it didn't occur to me to think about that aspect. I presume that you don't need to get different babysitters just because they have DS? Can they go to local nurseries as usual when they are very small or do they need specialist day care?

There comes a point when the kids grow up and parents get to be less attentive to where they are in the house and then later the kids can mess about on a beach while parents read etc. Something we've been looking forward to, having such young children now. If a child has DS, do you have to be 'on them' all the time for much longer / forever?

[roundthebend4]

congratulations

I have 4 dc 16,13,7,5 with ds2 and dd having medical needs but its ds3 who has sn first of all he was just like any nt baby infact as baby was dd who scared me more , did not know what was up with her to after ds3 was born .

But i refused any invasive tests for ds3 ,

Ds went to normal nursery , then moved and went to sn nursery he enjoyed both got differnt things from them .Was a child with ds at both and at the sn nursery the little boy with ds was way more able than ds 3 but as devin said like anything there is such a wide ablity

He also did ms school for a term but becuase he is pretty much non verbal were trying a speech and langugae unit see if can help with speech

[Eliza70]

Hi, I think it depends on the daycare setting you want to use. The one we used for DS1 is happy to take DS2 and he is starting there in October. Our physio has said she will visit them and show them some of the exercises we have to do, which I am really pleased about.