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

(114 Posts)
Flum Mon 11-Aug-08 20:18:51

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......

jimjamshaslefttheyurt Mon 11-Aug-08 20:46:22

I don't think this is the best part of the website to post on really as you're unlikely to get reassurance that it isn't going to happen from people it has happened to.

The odds of disability vary depending on individual genetic makeup as well. So the odds of ds2 and ds3 being autistic was very high indeed- 100 times higher than the odds for someone without autism in the family (so ironically 100 times higher than ds1's odds- although he's the severely autistic one and 'high risk' ds2 and ds3 are fine).

Of course having a disabled child affects the rest of the family - sometimes in bad ways sometimes in good. But at the end of the day you have a child who you love just as much as your other children. I think realising that disability is a possibility is something that should be considered when having children really. My first experience of someone close to me having a severely disabled sibling was from someone whose sister was knocked over and left brain damaged in her teens.

Sorry this probably isn't what you want to hear, but no-one can tell you that your baby isn't going to be disabled. Although the odds are of course definitely in your baby's favour. I can't guarantee that ds2 and ds3 - although fine now aged 6 and 3 won't be disabled by this time tomorrow, this time next year or whatever. There aren't any guarantees. I don't however spend time worrying that they might be because whatever happens I love them and we'll deal with it. Hopefully, touch wood (and [presumably in all likelihood) it isn't something that we'll ever have to deal with.

I think if this is something that is causing anxiety you're better off getting proper counseling really as I don't think you'll get the answers you need on a website.

expatinscotland Mon 11-Aug-08 21:03:43

I don't think a website of any sort is going to be able to answer that for you anymore than any website is going to give you odds on any guarantees in life.

Lots of people are born healthy in life, after all, and then become disabled through accident or illness.

I have a daughter with a disability that could not be diagnosed by any antenatal test. We don't know where it came from, it's pretty severe dyspraxia, and there's no point in speculating. She's got it, she's ours, we get on with it.

Please speak to your midwife about your concerns and perhaps get some counselling.

Nat1H Mon 11-Aug-08 21:42:27

Why waste a pregnancy worrying about what the worst that could happen will be? You should enjoy this time. Worry about it if it happens.

I can assure you - you will love your baby just as much as your other children whether it is disabled or not.

If you feel as though there may be a problem then speak to your midwife or obstetrician.

r3dh3d Mon 11-Aug-08 21:56:25

Tbh, I have never heard of such a website and I doubt it exists.

It's hard to know what to say without knowing more - do you have friends or relations with disabled children? To be horribly frank, it does sound as if you are scared of the bogeyman a bit. Having a severely disabled child is nothing like I would have imagined it to be before I had mine (had I thought about it at all). Kids with SN are just kids. With SN. Honestly.

Tclanger Mon 11-Aug-08 22:07:14

Flum,

I understand that you are concerned but I think that you may be asking the wrong audience here. We have all had to come to terms with a child who has a disability, of varying degrees and so I think that your question may be a tad insensitive.

I wish you a trouble free pregnancy a very safe delivery xx

misscutandstick Mon 11-Aug-08 23:24:26

Very soon after i was pregnant with my fifth son i worried that he might have some problem... that same thought followed most of the way thru pregnancy, it happens that it looks like he has autism...

However, i have 4 other children who are OK, was i worrying because i thought i was so lucky that my children were OK? i tend to think so.

How many hundreds of women have had the same worries and their children turn out to be just fine? Thousands i bet. It just so happens that I am here to tell you this story because i frequent a SN board having had a baby with special needs, of course on here you are going to find stories like mine. But if you stopped every mother on the street and asked them if they had worries about their babies before birth I would guess that a very great deal of them would say yes. The chances are very low of problems.

Please talk to your midwife and explain to her how worried you are, she will be able to tell you just how many babies she delivers each week who are fine and healthy!

Seuss Mon 11-Aug-08 23:27:32

Flum, i think, as others have said, you should chat to your midwife. You seem to have chosen to worry about something you have no control over - I get your reasoning about trying to prepare (I am a v. worst case scenario person) but it seems very irrational to be thinking so much about this. Basically it is something that you would deal with if it happens - that is as much as you can prepare, there are just so many variables. You can't keep worrying about this because where will it end? Will you analyse baby through all the developmental stages? (I do this with no. 3 so not judging!). I hope you can get past this and enjoy your pregnancy. Take care and good luck!

jimjamshaslefttheyurt Mon 11-Aug-08 23:33:41

I do have to add before I go to bed, that severely disabled though he is, I certainly don't regret ds1. I love him. Full stop.

Hecate Mon 11-Aug-08 23:41:48

Are either of your other children sn? Is this why you are worried?

Otherwise, - who knows? Whatever will be will be. Every parent has these fears, will the baby be ok, will anything go wrong..it's normal.

Having a disabled child is not the end of all things. There are many challenges and many joys in every child.

I have disabled children. They are perfect.
If you have a non-disabled child, it will be perfect, if you have a disabled child it will also be perfect.

And, tbh very blunt - any of your children could change at any time. Accident or illness could result in a disability. And you would love them and care for them because they are your children and your love for your child is unconditional.

TinySocks Tue 12-Aug-08 06:29:24

Oh Flum. sad. I hate to think that you are feeling scared during a time that should be filled with hope.
I can understand why you are so scared. I really can.
Why are you worried? What is different about this preganancy compared to your previous two?

For what it's worth, when I was pregnant with DS1 (who has special needs) I never dreamt he would have neurological problems. Never in a million years.
So you just never know either way.
Please try to relax.
xx

mm22bys Tue 12-Aug-08 07:21:29

It happens all the time. It is just a fact of life. Chances are your baby will be fine, but there is alwasya small chance your baby might have problems.

Then again, there are chances that your baby will be born "fine", and then get a virus, or be in an accident.

It could happen to you even (or me or your DCs 1 and 2)!

No use worrying....

mm22bys Tue 12-Aug-08 07:25:56

Sorry if insensitive, and not what you wanted to hear, but the other responses on here are spot on. This is really not the best place to post this, when we are all dealing with exactly this (obviously to varying degrees).

What won't kill you will make you stronger. Enjoy your pregnancy and don't worry about something till you actually have to deal with it (and chances are you won't have to deal with it anyway).

Best wishes.

FioFio Tue 12-Aug-08 07:55:07

Message deleted

AbbeyA Tue 12-Aug-08 08:13:55

I don't think that you can come to terms with things before they happen. You think you know how you will react but you don't know until you are in that position. There is no point in worrying-even if everything is perfect children get ill,have accidents etc.I try and live for the moment and not worry about what might happen.

anniebear Tue 12-Aug-08 09:22:34

a funny question to ask on the SN section!

lourobert Tue 12-Aug-08 10:06:19

I cant help but feeling this post is a tad insensitive.

Hope you can relax and enjoy the pregnancy

TinySocks Tue 12-Aug-08 10:24:01

Ladies, give Flum a break. She's just trying to get some reassurance. She is worried.

expatinscotland Tue 12-Aug-08 10:38:23

I'm worried myself, Tiny, but then again, I have a child with SN again.

Still, we took the chance.

There are no guarantees in life, and sorry, but I do find it rather insensitive to go on an SN board and ask for odds on having a child like ours. hmm

Ilovehousemusic Tue 12-Aug-08 11:22:20

Sorry but I don't think this is just a tad insensitive. I find it extremely insensitive

sarah293 Tue 12-Aug-08 11:26:59

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MannyMoeAndJack Tue 12-Aug-08 11:40:40

You could go for genetic counselling...the waiting lists are long and as you are already pregnant, it would be a little late in the day BUT by asking questions about your family history, the geneticist would provide you with a magic number statistic of how likely your dc will be disabled.

I'm not a geneticist but I'm guessing the statistic s/he would give you would be in the region of between 0.1% and 25%

There is no crystal ball, there are no guarantees. Even if you had invasive testing at 14/16wks to rule out certain genetic abnormalities, the rest of your pregnancy and eventual labour would not be 'protected' by the test results.

SixSpotBurnet Tue 12-Aug-08 11:49:42

Flum, I hope I am not being insensitive, but I really think that ratehr than going hunting for statistics, which I reckon will only wind you up more, the best thing you can do is to try and relax and enjoy your pregnancy.

There are just so many variables - e.g. what do you mean by "very special needs" - I would consider having had a son with talipes that it is so minor it hardly counts, but yet women have been offered terminations for talipes. It all depends.

I have one son who has an autism dx but who is very very high-functioning, one who was born with talipes, and one who has autism (not high-functioning). I know I have been whingeing on here of late about DS3, actually consider myself very very lucky indeed when I think what some people have to deal with. Maybe you should try and focus on the positives in your life, large and small, enjoy each minute of having that new life growing inside you, and try not to torture yourself with worries?

FioFio Tue 12-Aug-08 11:53:42

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sarah293 Tue 12-Aug-08 12:03:18

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FioFio Tue 12-Aug-08 12:05:43

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Seuss Tue 12-Aug-08 12:05:44

I really don't think Flum meant to be insensitive - just looking for reassurance like Tinysocks said. I'm sure everyone has worries like this when all those hormones are kicking around, it's quite easy to lose perspective.

Seuss Tue 12-Aug-08 12:06:17

And what Fio said!grin

sarah293 Tue 12-Aug-08 12:06:30

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Seuss Tue 12-Aug-08 12:10:08

puke - lol

deepbreath Tue 12-Aug-08 13:04:29

Flum, even if there was such a website, I think that looking at it would make you more anxious. Whilst it is natural to be concerned, it seems that this is taking over your pregnancy.

If you haven't already done so, I would tell your midwife how you are feeling, as she can try to allay your fears or refer you for counselling to help you work through this. In the absence of a known genetic problem in your family, you are unlikely to be offered genetic counselling, as waiting lists are long even for people that have genetic conditions and who are known to be at risk.

Most of us on here have children that were born with various problems (my dd included), so posting here was bound to get responses that you might not want to hear.

My MIL had 3 healthy children, then had my dh. He has a genetic condition that occurred spontaneously. Nobody else in his family has this. She still feels guilty and wonders if she did something when she was pregnant to make this happen, even though it was just one of those things.

Best wishes for the rest of your pregnancy.

sarah293 Tue 12-Aug-08 13:24:25

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expatinscotland Tue 12-Aug-08 13:40:49

'And even a 'normal' child can break your heart and run away or become a drug addict.'

Or have their lives blighted by mental illness or substance addiction.

A goood point, riven, and a good way to see it.

Hecate Tue 12-Aug-08 13:43:17

FLUM. Are you ok, I notice you haven't come back. Please don't feel bad.

sarah293 Tue 12-Aug-08 13:44:18

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SixSpotBurnet Tue 12-Aug-08 15:06:14

riven sad at your eldest

mm22bys Tue 12-Aug-08 15:36:07

But so often there is no cause, and the doctors can't even pin down exactly what is "wrong" with a child, and they definitely can't say what caused it.

So you can have all the counselling, all the genetic tests and ante-natal screening in the world, and the best, easiest labour, and it can still go pear-shaped.

I just wished I had realised or thought more about this when I was pregnant. I thought after my two DS2 were born, the worst was over.

As someone said, shit happens.....

sarah293 Tue 12-Aug-08 16:00:09

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mm22bys Tue 12-Aug-08 16:16:34

I've been thinking about this for a while now, and have come to the conclusion that I have been too sheltered my entire life. When I was at school, mostly during the 80s, the only experience I had of Sn children was once a week for some of one term at a "special school" helping out, and in the year below me there was a girl with DS. That's it.

I have a condition that meant there were chances of complications during my pregnancy and labour, but noone talked to me about them having lost-standing problems. I did go see them recently, and they hadn't any experience of other diabetic mothers' children having issues like DS2.

Because I've been so "sheltered", all these issues happen to Other People. I do wonder if it's contributed to it taking a long time to Accept it all.

mm22bys Tue 12-Aug-08 16:18:40

Where is Flum?

FioFio Tue 12-Aug-08 16:25:00

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MannyMoeAndJack Tue 12-Aug-08 16:49:14

When I was a kid I can remember just ONE boy in a wheelchair (very severe CP looking back now) and just ONE girl on the spectrum. All the DS kids went to special schools (well they must've done because there were no DS kids at any of the school that I went to). Whenever these schools were joked about, I wondered why - I really did not know anything about disability at all because as a kid in the 70s and until fairly recently, SN kids/adults - and the facilities for such people - were not visible at all.

I would say that it's human nature to think that bad things happen to other people, whether that's being burgled or having a SN child. I wonder what has raised Flum's awareness of disabilities because when I was expecting my ds, the ONLY disability that I thought was realistically possible/was told about was DS (see above for reasons why).

mm22bys Tue 12-Aug-08 16:59:32

There is one condition that for so long I was really worried about them getting, and they still could at any time, but I am not going to say what it is for fear of Tempting Fate!

amber32002 Tue 12-Aug-08 17:35:30

One of the strangest conversations I had was with a friend whose children have no SNs. After some 13 years of knowing our son, she said to me "don't you ever get concerned that he's not as good at everything as my son is". hmm

I replied that in my eyes he was just perfect. And he is.

Tclanger Tue 12-Aug-08 17:46:05

I understand that when you are pregnant you can be a mass of hormones and anxiety but the OP almost seems to be saying "I would regret having a child like yours" Although I'm sure Flum didn't mean to offend, it just made me feel really sad.

We have to deal with comparisons to NT children every day of our lives, I just felt that the special needs boards, probably wasn't the best place to look for reassurance,for those kinds of fears.

jimjamshaslefttheyurt Tue 12-Aug-08 18:12:16

I do agree TC- tend to be fairly open mouthed when people say this sort of thing in RL. I do tend to interpret it as people seeing ds1 as such a vegetable that it's Ok to say anything about him/children like him. When really it isn't.

we do love our disabled children every bit as much and as strongly as our non-disabled children, but I think that perhaps many people without a disabled child don't realise that/can't imagine that.

lourobert Tue 12-Aug-08 19:49:46

Ever since I worked as a volunteer in the special olympics when I was 16 I knew I wanted to work with people with disabilities. I worked with adults at day services and residential units and I worked in a school and ran an after school club and also worked in a childrens respite unit. I loved my job but it was other peoples chilsdren I was taking care of and I never thought it would happen to me.......!

Well it did. After the most plain sailing first pregnancy, did everything by the book etc I have a child who is classed as 'severley disabled' who will be 3 in October. Didnt plan it, wasnt ready for it and still have days having difficulty coping but hes mine and I love him dearly and he really is the apple of his grandparents eye!

What hasn't killed me has definatly made me stronger thats for sure

time4me Tue 12-Aug-08 20:00:50

Hi lourobert,I am the same,I worked with sn for many years before having my son.I get a bit hurt if people say to me,oh is that why you work with sn because you have a child with sn?Pure coincidence.
Sorry but I think this question is hurtful,in the context that we are in this position and she wants some statistics.Sounds like reassurance and I don`t think this thread is the right place to seek it.

lourobert Tue 12-Aug-08 20:08:28

I get told all the time......you must cope really well having worked with sn kids...um, slightly different when its your own!

expatinscotland Tue 12-Aug-08 20:09:58

aw, lou, that's right up there with the 'God chose you to be your SN child's parents because you are special'

[cocks shotgun]

jimjamshaslefttheyurt Tue 12-Aug-08 20:27:05

It is a fair enough question, and probably a common concern when pregnant, but perhaps (well definitely) the wrong audience.

time4me Tue 12-Aug-08 20:27:40

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

time4me Tue 12-Aug-08 20:31:59

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.

jimjamshaslefttheyurt Tue 12-Aug-08 20:41:20

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).

FioFio Wed 13-Aug-08 08:28:58

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sarah293 Wed 13-Aug-08 08:33:10

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jimjamshaslefttheyurt Wed 13-Aug-08 08:38:48

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.

Seuss Wed 13-Aug-08 08:53:29

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...

sarah293 Wed 13-Aug-08 09:02:02

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Seuss Wed 13-Aug-08 09:09:10

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.

jimjamshaslefttheyurt Wed 13-Aug-08 09:19:24

Flum posted quite a bit yesterday (assumed she hadn't been back which was why she hadn't replied). Bit hmm 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.

jimjamshaslefttheyurt Wed 13-Aug-08 09:22:25

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.

amber32002 Wed 13-Aug-08 09:56:33

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.

anonandlikeit Wed 13-Aug-08 10:05:23

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

jimjamshaslefttheyurt Wed 13-Aug-08 10:36:53

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'.

SixSpotBurnet Wed 13-Aug-08 11:31:04

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.

jimjamshaslefttheyurt Wed 13-Aug-08 11:56:41

God, what on earth did you say?

theheadgirl Wed 13-Aug-08 12:01:02

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.

SixSpotBurnet Wed 13-Aug-08 12:12:25

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.

FioFio Wed 13-Aug-08 12:14:02

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amber32002 Wed 13-Aug-08 12:29:06

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. hmm

SixSpotBurnet Wed 13-Aug-08 12:31:16

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?

jimjamshaslefttheyurt Wed 13-Aug-08 12:54:36

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,

TinySocks Wed 13-Aug-08 12:55:51

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.

jimjamshaslefttheyurt Wed 13-Aug-08 13:01:22

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.

FioFio Wed 13-Aug-08 13:13:11

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FioFio Wed 13-Aug-08 13:15:23

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jimjamshaslefttheyurt Wed 13-Aug-08 13:18:30

Yes that's it Fio. I don't really care that someone would terminate for DS (and presumably my son if a test was available as he has greater LD's than the vast majority of kids I've met with DS). I just don't have any wish to know that. Especially when they're not even pregnant so there really is no need to share that bit of info with me.

I do find it crass.

And yes people's attitudes to ds1 have changed. A non-talking 3 year old who was passive and cute and cuddly is different from a non-talking 9 year old who is far from passive and more crushy than cuddly.

Seuss Wed 13-Aug-08 13:42:51

Tinysocks - that was what I was thinking but kept getting interrupted by dcs and losing train of thought.smile

I think sometimes I forget that I haven't always known a life involved with special needs. When I see the way my younger children talk to their older brother and they just seem to get how to speak to him (and get answers!) and yet that's something I had to learn and not that long ago. Sorry rambling - have to go and find sandals....wipe bottom...etc

My best friend has an 8 year old ds with Autism and other disabilities. I have to admit that I saw the challenges and hard work involved and honestly didn't think I could cope a child with SN. However guess what? I now have three children with SN. DS1 and DS2 have Autism and DD has hearing impairment - it's too early to know whether or not she has Autism too obviously. You DO just get on with it. They are your babies and tbh if they're born with their SN you don't have any experience of them being any other way than they are so it's just every day life really.

People ask me how I manage - tbh I've not known any different and I have a very supportive hands on DH. It's just my life, they're my children and I love them and would do anything for them.

Seuss Wed 13-Aug-08 14:09:07

Glitter - That's the same for me, my eldest has autism and I didn't know any different, I don't think I'd even held a baby before I had him! It wasn't until ds2 started talking etc. that I realised what it was that ds1 should have been doing. I found it quite difficult when hv etc. asked questions because for me everything he did was 'normal' because I knew no different.

expatinscotland Wed 13-Aug-08 14:11:16

Thing is, plenty of disabilities simply cannot be diagnosed antenatally or are the result of things beyond anyone's control - illness or accident, for example.

I think a lot of today's prejudices towards people with LD or SN come from society's expectation that everything has to go well or somehow you've been shafted and it's not right or fair.

I mean, to me at least, it seems silly to get worked up in pregnancy because what will you do if your child is born, like mine, with an LD that can't be picked up? What if your child gets meningitis and becomes SN from that? Or in an accident? Or develops autism?

What then? Well, you have to deal then. You don't have any other option (excepting the Julia Hollanders of this world, of course).

Same thing as, what do you do if your parents or spouse gets something like Alzheimer's or Huntington's Disease or the like?

Do you just street them?

I'm probably not making much sense here.

jimjamshaslefttheyurt Wed 13-Aug-08 14:12:32

Yes snap. I had no idea that children just did things like drink out of cups until ds2 did it at 6 months. I thought it was normal to have to teach your 18 month hand over hand to drink from a cup hmm - and for it to take 3 or 4 days! ds2 was a revelation to me!!

FioFio Wed 13-Aug-08 14:13:16

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jimjamshaslefttheyurt Wed 13-Aug-08 14:15:47

"I think a lot of today's prejudices towards people with LD or SN come from society's expectation that everything has to go well or somehow you've been shafted and it's not right or fair."

God yes, it's everyone's 'right' to never have to face up to difficulties.

silverfrog Wed 13-Aug-08 14:26:00

Oh, the drinking out of cups rings a bell here too. we had to teach dd1 how to do it, slowly and painfully (and not very successfully, obviously, as she still has issues drinking!) - the only advice I ever got when asking around hvs etc was "have oyu tried using a straw?" hmm

since my query was how to get dd1 to understand that she had to suck to get anything out of a sippy cup, then that was not very helpful really hmm

dd2 has done it all as a matter of course...

EXCEPT - I still mostly spoonfeed dd2 (18 months) as she gets very frustrated and can't do it herself. Then, blow me down i came into the room this morning to find her scooping up lentils and feeding them, with a spoon, to her giraffe (we have been working on pretend play with dd1) - methinks dd2's easy ride at mealtimes is now over wink

on the disabled child front, I agree that you just get on with it as day to day life.

I too, had never held a baby before i had dd1. She arrived and was, of course beautiful and perfect. And then, slowly, day by day, it appeared she was, apparently, not so perfect after all. Tiny things, like not holding her bottle as a baby. Not picking up her cup. Not reaching out for a lot of her toys. But she was still my beautiful dd1. who giggled when she was tickled, who loved maisy books, who could practically knock you over at 10 months old in her enthusiasm to get to a slide. She just didn't conform to accepted child development. But that didn't change her personality, or the fact that we loved her.

Andnow, having dd2 (NT as far as we know) doesn't mean that I love dd1 any less, just because I have a "normal" child. It just means that I can see all the more clearly the things that should have come naturally to dd1. they are both my girls, and they are both doing things in their own way, at their own pace. Just as they should.

Pixel Wed 13-Aug-08 15:01:18

Dh and I recently went to London and saw 'Hairspray', which as you probably know is about racism and how it is wrong to exclude people because of their colour etc etc. Obviously no arguments with that. However I was saddened when one of the characters was called a 'Spastic' in a way that was meant as an insult. I know the actors just say the lines that are written for them but surely if they had objected then it could have been changed. It was one word, I very much doubt if anyone in the audience would have known if it had been changed to something else. The only conclusion I can draw from the fact that the word was left in, is that nobody in the cast saw anything wrong in it. sad

can I just say that I love reading about everyone's children

After the morning I had with DS1 (called DH in the middle of his conf call to tell him I am walking out of the door and never coming bac sad), it's good to come here with a cup of tea for a couple of minutes

..that's it, tea break over grin

I have really enjoyed reading this thread. I don't have much to add to the excellent posts already here. JimJams you are a star and a genius.

I didn't post initially as I was rather taken aback and upset by the op. But I am glad the post has generated discussion.

mm22bys Wed 13-Aug-08 17:02:32

I was thinking yesterday, but didn't post it, that while some of us initally thought that the OP was being insensitive in posting here, maybe she came here to hear exactly what so many have said, that it IS "all right" in the end, that even though it may be not we would have chosen, we still love our children, we still do the best we can for them, and life in no respect is "over".

Even if she doesn't want to post anything else here, I really hope she is reading all these posts...it's really helped me (still coming to terms with the SN world and that fact that it isn't always all fair and OK...)

jimjamshaslefttheyurt Wed 13-Aug-08 17:35:45

I had a bit of a eureka moment myself this year.

It was when ds1 started doing moor walking (I think). I may have constructed some of this in my memory- so it may be pieces of memories.

But we'd walked up to Roos Tor and stopped to have a snack. We were the only people around and ds1 appeared to be enjoying it as much as me. And I realised despite his profound autism and severe learning disabilities he was having pretty much the same experience as me. He was enjoying being in that beautiful place ever bit as much as I was. It was perfect.

And I then realised that life is about experiences. And who am I to judge his experiences any less worthy than my own. His life and experiences are equally valid. I've found it quite life-changing in a way to realise that. HIs severe disability really doesn't make his life any less important or valid than my own.

FioFio Wed 13-Aug-08 17:38:17

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Seuss Wed 13-Aug-08 18:08:38

Well put jimjamssmile

Tclanger Wed 13-Aug-08 18:18:16

here here jim jams

MannyMoeAndJack Wed 13-Aug-08 18:35:29

Really good thread...

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

Ah but here's the rub - you would never have known that you were shallow!

VeniVidiVickiQV Wed 13-Aug-08 18:41:11

Fascinating.

jimjamshaslefttheyurt Wed 13-Aug-08 18:42:38

Manny perhaps I still am

lourobert Wed 13-Aug-08 20:37:46

COuldnt agree more Jimjams and what a great thread for one I thought might have ended up a bit pear shaped....!

jimjamshaslefttheyurt Wed 13-Aug-08 20:41:46

It still could lourobert....

lourobert Wed 13-Aug-08 20:56:06

I was in asda today and saw a man I knew was an athlete when I worked the special olypmics...this was in 1997, he walked up to me shook my hand and said...'hello Ruth, I havent seen for you ages' I cant believe he remembered me and it made my day. As we walked off the friend I was with said 'no wonder you're single if thats the kind of man you attract, first I was shock that she would say something like that but then I thought you know what I would much rather have spoken to him today than anyone else in the shop.

This man also went on to tell me that he went to watch Pompey in the charity sheild at Wembley, his carer was apologising for him being a nuisance but he that couldnt have been further from the truth.

I loved his honesty and you could see the joy as he relayed his day at Wembley to me, he had no agenda and it made me think of my own ds in many ways.

It ben a bumpy road but were gettig there

Seuss Wed 13-Aug-08 21:04:03

smile Lovely story. Get what you mean about no agenda - I think thats what is lovely about ds1's special school, the fact that everyone just is who they are and no-one cares about daft things or how they look to others or anything.

Seuss Wed 13-Aug-08 21:04:45

shock at your friend tho!

jimjamshaslefttheyurt Wed 13-Aug-08 21:17:35

That is a lovely story although am also shock at your friend.

Shells Wed 13-Aug-08 22:06:05

Just to agree with everyone else really. Have really got a lot out of reading this thread. What a nice group of people you all are.

SixSpotBurnet Fri 15-Aug-08 10:58:32

Jimjams - at the risk of sounding very slushy - thank you for sharing that with us. I know that sounds trite but I really mean it.

Tclanger Fri 15-Aug-08 11:09:30

And hopefully Flum knows that should (and God forbid)her baby have special needs, she can be sure of support on here

Tclanger Fri 15-Aug-08 11:16:19

And I only mean that in the respect of Flum's worst fears being realised, not in relation to any old our BEAUtiful kids, in case it was ambiguous.

jimjamshaslefttheyurt Fri 15-Aug-08 11:27:23

I think it was a final piece of acceptance for me SSB. Took years to get there though When they're little everything is compared to 'normal' and there's a drive to try and catch up and a oush for 'normal'. Anything else is seen as not being as good or as worthy.

As ds1 has got older 'normal' has become less and less relevant to him, and I do feel now he can have his own experiences and not be compared to others anymore.

And that's a happy place to be. His life is pretty full now. He's started climbing, he goes walking on Dartmoor, he;s been to Ireland this year and we're going to go camping for 3 nights soon. That sounds pretty good for a 9 year old boy to me.

SixSpotBurnet Fri 15-Aug-08 11:30:25

Jimjams, that is inspiring. It really is.

Lourobert - your story is great, although I share others' shock at your friend's response!

sarah293 Fri 15-Aug-08 11:51:34

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lourobert Fri 15-Aug-08 12:08:11

I try not too but I will never stop comparing ds to others....I know its silly and pointless but cant help it!

jimjamshaslefttheyurt Fri 15-Aug-08 12:13:17

He's still tiny though lourobert- and at an age when everyone compares children.

A good move for us was the move to special school. IN mainstream all ds1's targets were in comparison to normal, as were his assessments and teacher's comments. ONce he got to special school he started to be compared to himself rather than others. That helped too.

Tclanger Fri 15-Aug-08 12:37:19

I try not to compare. Its assessment time for us over the summer so we are having to take note of how big the deficits in speech and language are for M.

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