If you have a child with DS, please can I ask you some questions?

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We have been told we are very high risk for DS and I am not keen to undertake CVS or amniotic lightly. I am also feeling overwhelmed with the fact that I have to make a decision that will effect the whole family. So, we will only do invasive testing if we would terminate but I am very reluctant to even think about that unless I need to be 'big enough' to consider that.

My questions are awful and down to my total ignorance and I really don't want to offend. My heart is in the right place but I just need some help. We have 2 young DCs.

1. If you knew when you were pregnant what you know now, would you terminate?

1. Do the non DS siblings lose out greatly because of extra appointments etc

1. Bearing in mind the uncertain provision for adults with DS, is it unkind to knowingly bring them in to the world.

Can I start with those and ask more later? I think my concern is for teens and adults with DS - from their point of view not mine.

Thank you so much and I am so sorry again at the awfulness of my questions.

I don't have a DS child myself, so feel free to disregard this. However my husband's younger brother has DS so I can tell you about that.

2. Child with DS is the fourth of four boys. The others definitely didn't lose out at all. The general feeling among the brothers is that because the youngest had Downs, the effect on the family was much less than if the eldest, for example, had had Downs. Because he's just their younger brother, and younger kids always have more needs, more dependence, more doctors' appointments etc than the elder ones.

3. DS child is now 28. He has his own flat (warden-controlled with daily help for cooking etc). He has had a job for many years washing up and doing vegetable prep at a pub. He also takes adult college courses. There is an amazing amount of support out there and he has a very happy life. The only thing that has made him unhappy as an adult has been difficulty finding a girlfriend, as there is obviously a much smaller pool of girls who would be suitable. However, he now has someone and they are very happy together.

The only thing I would add is that among DS children there is still a huge variety of ability and potential. I believe my brother-in-law is at the top end ability-wise, so this may not be a typical picture.

HTH

I dont have a ds child but i follow a blog by this american lady with a dd that has ds, i dont know if you will find it useful?
www.kellehampton.com/

Hi,

I have a DS brother (26) who is at the lower end of the ability specrum - can talk, but can't read, write, tell the time, cross the road etc. He is exellent at sports though, plays for a local cricket side (teenage group), goes swimming, plays football, has friends, goes to social events etc. Probably has more of a life than me! He attends a day centre during the week, and is the happiest person I know. There are a lot of activities which he can access run by voluntary groups, social services etc, you may be surprised?

My brother is the third of four children (I'm the oldest), and I don't think it impacted on our childhood particularly. My Mum's long fight with cancer had far more of an impact, so just shows you can't plan your life out!

Thank you so much to the link for the blog - I'll have a read through. That's really helpful.

Peabody and ilovemountains - thanks so much for your replies - can I just ask you - if you were pregnant and were told it had Down's - would you terminate / continue the pregancy but feel sad / continue the pregnancy without a second thought and be excited about it?

I was also worrying about the girlfriend thing - I remember seeing a group of lads at a pub one night, one of whom had DS and he was trying to chat to the girls like his mates were and he was just blanked and he looked like he'd been hit round the head with a wet fish. I felt heartbroken watching it. It's this kind of thing that's tweaking at my heart strings. It's wonderful to hear that your nephew is sorted in that department!

I know exactly what you mean about comparing it with a battle against cancer. My mum has cancer and that's very difficult for everyone.

We've always declined testing, becuase we wouldn't terminate so didn't seem much point. That isn't to say that that is the right decision for everyone, it's just our decision.
I guess if we did have a Down's baby we'd just accept it and get on with our (slightly modified) lives, but that might just be a reflection of the kind of people we are. We'd still go camping, on holiday, swimming, toddler groups etc, and it would still be exciting. Rather difficult to say how I'd feel as (perhaps bizzarely?) I've never thought about it.

Not sure if that's any help or not, hope you are doing OK.

PS.My brother has a DS girlfriend too!

I don't have a childe with DS but my cousin is and an acquaintance does. Cousin is the youngest of nine and is quite high functioning, he attended mainstream primary school in Ireland and then a special school, currently does one day a week on a special course at Trinity College Dublin and does work experience for his brothers, he can talk, read etc.

The other DS child is 6 cannot talk but again at the moment goes to a mainstream primary school, has a statement and therefore a helper.

At DS nursery there is a lovely girl with DS who comes in and works one day a week, she lives in a house with two others and they have 24 hour live ins to help with their independence.

If I had learnt that either of my DC's had DS then I think that 90% would not have had a termination.

DS syndrome children can go on to lead very independant lives with the right help and can live better lives than some children with autism on which you cannot test for before birth and only find out few years down the line

the decision is yours and yours alone to make i have a child with autism and of course we had no idea as no tests for this before birth but wither way i had already agreed that i would have my baby no matter what but thats my choice

i wouldnt change my boy for the world even if i did know before i would have it no other way

my friend had baby at same time as me and he has DS she says its no more harder than when she had her other 2 children its tough at times but so is being a parent anyway

x

wither = either

sorry that should have said my friend has DS son

I don't have a child with Ds, but I do have a child with autism. I love him and would never send him back ! but I have sometimes imagined a parallel universe without him in it... I won't list off all the ways that that would make life easier for dc1 and me. Dc1's behaviour has become bad and I think it's because of all the attention dc2 gets. it's a tough decision... I would never WISH that I hadn't had my son, but I can logically see that if I'd never had him, my life might be a bit more carefree.

ps, in some ways, although I don't knwo obviously, I think day to day life with a child with downs might be easier than day to day life with a child with autism. I could be wrong and apologise for erroneous misconceptions in advance, but I believe children with DS are quite laid back and don't mind going to new places and just fitting in with a family. with an autistic child it is the exact opposite, so, totally ignore my first post please.

I also have a child with autism.
The only thing I can speak to is the effect on siblings
My eldest son struggled when DS2 was diagnosed. DD was born when DS2 was 6 so knows nothing else.

I obviously think my children are great but I would say that when other people comment upon how lovely my children are, how polite and considerate , how thoughtful and caring - I think that is in part due to the fabulous view of life they have via their brother.
DS1 thinks DS2 is extraordinary and feels quite priviledged to be his sibling. DD finds him a bit annoying and yet is very proud of him and quite terratorial about him.

I get quite pissed off when I hear the siblings cited as a reason not to proceeed with a pregnanacy that may result in a child with difficulties.

For my Dcs DS2s issues have been a very unexpected plus.

Sorry to be pedantic but isnt there a topic for this so that people who dont want to see this sort of discussion can have it hidden?

I think there is a pre natal testing/choices section which I expect can be hidden.

(Not least so that can can avoid things like "DS children" rather than 'child with DS', I expect)

Thank you so much everyone. By so many of you replying to my numerous posts about this, I am finally back to where I started. I don't know why I got a sudden wobble about what was the right thing to do for the baby. I was in no doubt before. I think it was just me needing to find out a bit more info to be prepared, coupled with the inevitable time pressure that was waved in my face and the almighty panic that I had about the screening rsults being an indication that there is a severe non-down's chromosomal disorder that we really do need to know about.

Thank you to all of you I feel that my feet are back on the ground and that whoever has been chosen to come and live with us, has been done so for a reason.

Omnishambles - it's not that people don't want to see these conversations. What and extraordinary comment

It's so people who are experiencing issues with children who have special needs don't have to put up with ignorant comments from people who have no clue what they are talking about but feel entitled to butt in with 'helpful' advice.

fair enough what I should have said is that I dont want to click on a thread and see a conversation about this sort of choice - and was just pointing out that there was a topic specially for it that I have hidden.

No need for

I work in a supported living house. One of the tenants there is inher 20'as and has DS, She is ablee to cook and clean for herself and has been to college, Yes she needs support but has a good quality of life, She goes to the shops and does other activities like cycling.swimming and bowling.
I have also supported a14 year okd boy who had DS, Hewent to main stream school and was in a main stream class, He just needed a bit of support with his writing. He was able to get to school on the bus by himself.

I'm really sorry - I didn't mean to cause any offence.

:(

jeez give the OP a break... No matter how perfect your use of apprropriate terminology language might be now I'm sure there was a stage where you struggled to accept it all, and didn't automatically know all the right terms, and what might cause offence to some. Nobody gets to zip through that station without stopping.

Valium
was that aimed at me?

I wasn't giving the OP a hard time. I think my replies were OK - I certainly was trying to be helpful.
I was trying to explain why the topics are seperated - because of sensitivities which can range from mind boggling offensiveness to subtlties of language.

Did that warrant a .."jeez..."

Dont worry will hide thread - I was just trying to point out that there was a topic for antenatal testing thats all - thats not rude, just housekeeping.

It was aimed at omnishambles really but I don't want to single anybody out. It's just that when you're pregnant and have all of this on your mind, it's not the time to have people giving out to you about your slightly inappropriate choice of words. focus on the big picture!

Its not about the words valium - its more that I find the antenatal choices conversations really very difficult and upsetting and so really liked it when that topic was introduced thats all.

I know its my problem to deal with...