Interesting article

[needmorecoffee]

here

Hi Needmorecoffee

What an interesting article - thought provoking and I admit I had a little blub reading it.

I haven't ever been faced with a situation like the one in the article. DS2 was diagnosed with asd, so it has been an unfolding story.

Thanks for sharing that.

me neither as dd was brain damaged by her birth but I'd never terminate a baby cos it was disabled.

Yes, it is very interesting.
Before DS was born, I would have honestly felt the same as the author, I mean, why put yourself through it, if there is no chance of a normal life? I don't think I would have continued with the pregnancy either.
Now that DS is here (no prenatal test could have told me that he would become seriously ill after his birth) I feel entirely differently.
There is a line in there about the choice between a disabled child or losing a child being an easy one. She's right. I'd have accepted DS in any condition just to take him home. I don't think that you can possibly understand that unless you've been there.
Then of course, there is the fact that he has defied all the doom monger doctors and is doing wonderfully well at the moment.
And even if he wasn't, he is my Son, perfect to me in every way. I never believed it (please don't flame me) when people talked of the joy their disbaled child brought into their life . All I could see was problems and disappointment and grief.
Now I know that joy, I can't imagine loving anyone as much as I love him.
But like I said, I don't think you can know that until it happens. I wish you could, and perhaps there wouldn't be so much fear attached to disability

maybe cos I dislike abortion anyhow and am disabled myself I could see the value in disabled poeple even before i had dd?

I am pro-choice, regardless of the reason why the parent(s) want to terminate.

My ds has a severe condition which is not detectable by any scan or ante-natal test.

I feel the opposite to feelingbitbetter; I would terminate a pg if the baby was found to have problems because I know how difficult bringing up a disabled child really is, i.e. I don't have to imagine it.

And I realise that a 'normal' baby can experience birth problems or can become ill after birth, etc, making them disabled but that is not something over which you have any choice, anymore than if you are attacked in the street and hit over the head with a brick.

Hmmmm. I'm not pro-abortion either and when I read of terminations for club foot or cleft palate etc. I feel ill!
It's certainly not that I felt there was no value to the lives of disabled people, more a case of why inflict suffering on the child and yourself if they are known to have a life-limiting condition? I could only ever see how hard it would be
Just to confirm, that's not how I feel now. Just being alive, disabled or not, is potentially a life limiting condition.

majority of disabilities don't involve 'suffering' for the disabled person. Thats firmly in the medical model of disability.
My dd is severely disabled but I still wouldn't terminate any future pregnancies.

Feelingbetter - I'm glad that your DS is doing so well and I felt just the same about the problems, disappointment and grief. I was so 'stuck' and just couldn't feel the positives or the good.

However, I think that as I have started to accept that DS is autistic, that I have moved away from feeling that it was my fault - (I have spent a long time thinking about this!. Now I can only see positives in him or the joy; he is great and I also love him (and the other 2!!)

Needmorecoffee - I think, your point about 'seeing the value' means everything.

MMAJ, that is an interesting point too - you don't have to imagine it because you know so you are making an informed decision.

When I was pg with DS (my first) I worried, I think as every mother does, about what would happen if something went wrong. The idea that I may not have a 'perfect' child was just horrifying (I know, don't slap me, I'm trying to be honest). I imagined it would be far more difficult than it turned out to be.
Beforehand, I honestly didn't know if I would be able to bond with/love a severely disabled child. In my (stupid) head, I didn't realise that you got anything back.
I love DS more than anything and I know he loves me.

NMC the suffering is how I used to see severe disability. I feel ashamed of that now. I used to think that life was just one long struggle, now I know, in DSs case anyway, it's just different.

the medical model has 'suffering' firmly stuck in the centre and all the emphasis is on the medical impairment. The social model says that first and foremost, a disabled person is a person, just like anyone else.

NMC - I am educating myself about this but from my understanding the social model is non judgemental/equal and provides a framework for thinking about disability.

I think a lot of my feelings of negativity have been due to fear, not fear of my son's asd but fear that I wouldn't be able to step up to the mark. Experience and education (ongoing!) is helping me to understand his disability and alter my perception.

It's all good.

he social model emphasises that a person is mainly disabled by barriers - often in the attitudes of others. So seeing disability as suffering and worthy of termination is an attitude that affects disabled poeple's lives. I'm not explaining it very well. I'm tired.
Fear is a disabling attitude that can bugger up disabled poeple's lives in society.

Poor woman. I would have terminated for Patau's in my first pregnancy as well. Then I came across an amazing website set up my the parents of a little boy with Pataus. He was their first child, a miracle (they thought they were infertile) and he lived for about 3 or 4 months. (Very few children with Patau's make it past a year) But oh boy oh boy he was showered quite literally in love and he died peacefully with his parents. And I realised that that scenario would be far easier (mentally) for me than a termination. And that even a short life can be worthwhile. And to be a little crass you don't usually need to think long term with trisomy 13.

So for the the second and third pregnancies we decided we would only terminate for 'incompatible with life'. It wouldn't be the correct decision for everyone, but I do think counselling should be offered - and there shouldn't be the automatic assumption that someone will terminated. Had I terminated a pregnancy for trisomy 13 then come across that website it would have killed me. It would seriously have affected my mental health.

Explanation understood; thanks NMC.

thats what I thought Jimjams. We were told dd would die at birth so every single second was precious. As it was she didn't but if she had then seeing her and knowing her would be so much more preferable to never having known her, however short or painful it might have been.
There needs to be counselling.

you'll need hankies but oh my god, this website changed my view of trisomy 13. The way his parents just celebrated him, and the positive effect he had. People need to know that this sort of scenario is another option. With severe disabilities that come with a very limited lifespan often 'letting nature take its course' is a valid option for some people. Of course not everyone, but at least spell out the options for people. Before I saw this I thought that all trisomy 13 was incompatible with life.

I swear Nov 21st is one of the most moving things I have ever read. I still can't read it without bawling (and I'm not like that!) What a beautiful and special little boy.

Before I had children I thought I would terminate a severely disabled child, as soon as I had a child i knew that I could not do that in any subsequent pregnancy as I then thought of each baby as an individual even before it was born not as some fuzzy fantasy child who didn't really exist until it was delivered. I know someone who had a child with Edward's syndrome, the baby only lived for 8 weeks or so but was fully a part of the family and was welcomed into the local community like any baby until it died and I definitely think that although it was very sad there was joy and love too and that it seemed to me that that would be a lot easier to live with than the guilt of a termination.

The other point that is so so sad in this article is the lack of support this poor mother experienced when making the decision to terminate her much wanted baby. I do not think the pregnancy was terminated because the life of the baby was in any way undervalued by his parents. More that having discovered the baby had a life threatening genetic abnormalty, she was illprepared to not make the expected decision to terminate rather than let nature decide it for her. That is the problem with testing isn't it? Parents test for reassurance - to rule out 'problems'. But when the result is not reassuring news- the balanced support (and time to consider) is not available.

Well written and thought provoking article. I hope the person who wrote it realizes it will touch a lot of people and change lives.

emotional here too

I decided to refuse all bloodtest unless they could lead to something being 'fixed', ie I had an HIV test. As termination is not something we were willing to consider blood tests seemed useless.

a fellow christian friend had an amnio two days ago as her risk for downs has come back as very very high.

whatever she decides to do she is my friend and I will not judge, but i would inwardly struggle with it.

especially as I thought I was having a healthy baby and he turned out with a disability, and he is my dream child, such a delight.

we just know too little about too little

{will end hormonal ramble here, first af in 18 months, apologies)

jimjam, sobbing myself silly have just read the diary.

Oh jimjams, I remember you posting that site for the first time . It changed my view of Patau's and Edward's syndromes too.

I actually feel lucky in a roundabout way that we couldn't ever have detected dd's disability; I think the 'old me' might not have considered myself strong enough to cope with having a disabled child. Obviously I now know that of course I bloody am, and that dd is absolutely the most important person in my life (with dh ).

slackrunner I totally agree. There is definitely an old and new me.