What are the odds that baby will be disabled/brain damaged/very special needs?

[Flum]

I am expecting third baby and feel I am worrying overly that there will be a problem with this baby. It is as if I am trying to come to terms with it in advance (impossible I'm sure). I am worrying about how it would affect rest of family and worse still and am so sad and ashamed to admit this - that I would regret having third child.

Is there a website that actually lets you look at the true odds of things going wrong with babies in the womb/during childbirth, so I can get my head around the actual facts. Perhaps it would make me worry more though......

Agree agree expatin.I know so many sn children in care because their parents could not cope,so God did not do such a good job there then

Its just that so often you get these queries wrapped up in a soft outer shell,then you realise it is a subtle put-down,or prying.
I am not saying this is Flums intention,but there is a problem and disabled/brain damaged/very special needs.These are searing words to a mum who has been through the experience.It is inappropriate.

I do agree, but I genuinely think when people do this in RL they haven't understood that I love ds1 every bit as much as I love ds2 and ds3.

I always wonder what they would think if I asked the question back at them but framed it in reference to their child (but I never have done).

I would have been sick on the spot if someone had taken me with baby ds1 to his SLD/PMLD school and told me that he would be going there.

Now it's my favourite place- really my favourite place to spend a few hours. The kids who go there are wonderful, the atmosphere of the place is wonderful and there's nothing on earth like their assemblies. I always end up laughing when I'm in there, and the staff always seem to be laughing. I'm pleased it's become a part of my life.

I'm about to take ds1 to his playscheme which takes kids from the 2 SLD/PMLD schools in the city and the staff there are always laughing as well.

Like Fio I think I may well have been pretty dreadfully shallow without ds1.

Fio/Jimjams. I feel the same about ds1's school. It makes me wish all schools were the same and in more rose-tinted moments I wonder why they can't be. Helping with ds1's school has given me more confidence to get involved with the school lives of the other two as well - so definately making me less shallow, smug, selfish etc...

quite right riven! After my 5yr old got excluded for school I completely ditched all that 'competitve mum' stuff. It's not that you stop caring about what they are doing but you stop sweating the small stuff so much.

Flum posted quite a bit yesterday (assumed she hadn't been back which was why she hadn't replied). Bit really as I worded my first response very carefully. I find comments like this in RL some of the hardest to deal with because it does show the utter prejudice towards LD's that people think its OK to say this to a child's mother.

BY which I mean people don't even realise they're being prejudiced. This isn't a go at Flum - it's just a comment that it's the thing I get most fed up of in RL.

The lack of filter when people start talking to you about disability/LD, the lack of understanding that I love my child/the lack of understanding that I see my child's life every bit as worthwhile as his brother's the lack of understanding that I'm going to feel fed up when 'children like him' are discussed in terms of termination etc etc.

I think it's just a complete lack of experience as much as anything else. It's so easy to 'buy into' the idea that children have to achieve a medal at sports day and be attractive enough to get compliments in school photos and be bright enough to get amazing school reports, or we've somehow failed. Like Riven says, when you have a child (or adult) with any sort of SN, the small triumphs are every bit as great as any national award, and the love's the same, even if we're tired and ratty and want to pin some government official to the proverbial wall.

Some of the most insensitive comments have come from friends & family, I guess they think because they know me I shouldn't be offended. It just goes to show that even though they know ds2 they still see his disabilities above everything else.

From birth ds2's future was so uncertain, in terms of would he speak, walk etc..
But as many have said nothing in life is certain.
I also get upset at talk of termination especially given that ds2 was very prem & some babies on the unit survived at the termination date.. but i guess thats another debate entirely

I don't get upset at termination as such. Each to their own. I just find it staggering that people think it's OK to say to me (as they did) 'oh my daughter had to have a termination for DS because she had to think of the other child and her job' when a) I don't know the daughter- really had no need to know b) we have ds1- so what about his brothers c) ds1 was standing there as well.

I was watching a programme about Life on Mars the other day - they were talking about policing in the 70's. They were saying that policing was racist, because society was racist. They then showed some clips from that dreadful Love Thy Neighbour and talked about how people had no idea how offensive that was as they had no understanding about racism.

I think it's exactly the same now wrt to society's attitude towards LD's in particular (and disability in general although perhaps to a lesser extent). Many of the things that have made me draw breath at their inappropriateness have not been meant badly- but the comments have displayed the total prejudice against LDs in society- which are so ingrained they're actually 'OK'.

Fantastic posts. You lot are so insightful. Awesome.

Talking about prejudices - I once did a session with some trainees at work which was meant to help them with their presentation skills. It was a role play - I had to play the part of a representative of a charity and had to brief the trainees on the work of the charity so that they in turn could prepare a pitch for funding.

I did it a few times with various different charities - one was TreeHouse and my trainees on that one did really well and actually got the funding.

But once I did the Downs Syndrome Association, and one of the trainees just kept saying, but what's the point of fundraising, there will be fewer and fewer babies born with DS, soon they can be pretty much eliminated and so this charity will not be necessary. I can honestly say that I have never experienced anger like I felt towards that young man. It was red mist time.

God, what on earth did you say?

I'm loving this discussion. Feeling quite weepy this morning after a very bad night with DD3. But for some reason this is making me feel better. I think its because you all KNOW.
And I agree, come back Flum. You won't be lynched, but you've just been given some very honest responses about what a wake up call it is when your child has SN. It really can happen to anyone, to any child, and frighteningly not just at birth too. And whilst its sad, and its not what you would have chosen, most of us on here would still not swap our child for one who's "normal" I hope that in itself is reassuring to you.

jimjams - I told him that his was an appalling attitude, that I was finding it hard to believe that he could sit there and say all that, and had he ever heard of Nazi Germany.

He said WHAT about people with Downs Syndrome?! Reminds me of many astonished occasions when I've been reading the USA 'Autism Speaks' community boards with their "even one person with autism is too many" opinions.

The most shocking thing about it was that he obviously didn't mean to be shocking. he thought it was uncontroversial - unarguable - that any prospective parent would (a) want to find out that their baby had Downs and (b) once in possession of that knowledge, would choose to terminate the pregnancy.

I don't get that autism thing - why would people with autism post a thing like that?

Autism Speaks are looking at treatment options, rather than termination though. They fund a lot of research. TBH if I could get rid of a lot of the condition associated issues related to ds1's autism I would. Being non-verbal aged 9 is not pleasant for him- indeed it is a source of much frustration. Being unable to understand verbs makes life difficult too. It's back to the condition versus culture arguments again - but Donna Williams is the person to read there.

However, autism and all it doesn't mean I value ds1 any less. I see how difficult autism makes his life. How many things he is unable to access because of his autism. And that makes me sad for him. That's not the same as not respecting him for being autistic.

I think that' it SSB- it's so ingrained people don't even realise the prejudice they're displaying,

Can I add my point of view in reference to Flum's post? I am going to try and phrase this correctly, bare with me ladies.... I have this horrible tendency of saying exactly what I think, so here it goes.

I can understand what you are all saying, I feel exactly the same way. But most of us have had a few years now of learning more about special needs, about our kids, about how more enriched life can be. And getting more in touch with what "special needs" really means. It does NOT mean the end of the world, the end of my life, the worst thing that could happen. And FAR from it. It is the most wonderful opportunity of becoming a more aware human being and feeling true true real pure love.

But if I put myself in Flum's position for a minute, without knowing all I now know, I think I would be TERRIFIED of having a child with special needs. She probably has no experience, she doesn't know what to expect, she is worried. She is only human. I have worded my thoughts really badly in the past, saying things I really didn't mean, just due to misinformation.

She said herself that she is "sad and ashamed" to admit that she is having trouble dealing with this. She is being honest.

So I think it is right to have some compassion, give her a shoulder to cry on, tell her that it will be okay whatever happens, tell her our are all happy. Rather than make her feel really bad (on top of what she is probably already feeling).

I hope that makes sense? I am really pondering as to whether to click on "post message". I don't want to fall out with you all, because I feel you are the only people I can come and talk to about DS1 and I would feel lost with this special needs board. But I cannot help saying what I think.

I really hope Flum comes back and tells us how she is feeling.

Yes I agree with most of that which is why I worded my first post very carefully.

But as ds1 gets older and it is more apparent that his disabilities are profound I get this all the time. And yes I would like some opportunity to say - actually its not OK to say to me, that you find my child so bad you would consider a termination/that you find my child such a vegetable that you will tell me that given half the chance you would get rid of a child with fewer LD's than him. I don't care what people do, but I don't feel any need to have that information 'shared' with me. What am I meant to say in return?

I am not talking about Flum's question here- I am referring to RL comments I have had about hypothetical terminations of hypothetical children with fewer LD's than ds1 that would ruin some hypothetical lives.

I probably don't have the patience these days to deal with the worried well.

This is kind of how I see DS1's disability - at home, with us, he is not disabled, but once we are out of the door, he becomes different. He freaks people out, because they have no idea. some of my closest friends have said some of the most hurtful things, without having the slightest clue that they were actually being offensive. Eg, 'do you really love both your children equally? REALLY? Wow.' As in, 'can you actually love a child like your DS1?'. It makes me sad because time and time again I am reminded that my family will always have to battle prejudices, even coming from those closest to us.

jimjam you made a good point re: racism - it is weird that racism is now politically incorrect, but it's ok to discriminate against disabled people. It's ok to talk openly about terminating pregnancies on public message boards, and make comments such as we have seen on MN many times over. But no-one would dare make such comments about skin colour. A funny world, isn't it.