Giving up v.severely disabled baby for adoption?

(375 Posts)
mirage999 Thu 08-Jan-09 16:31:05

Contraversial question I know - but is it possible or easy (practically, not emotionally) to give up a severly disabled baby (one that requires full time special care) at birth for adoption or have it placed in care?

I am trying to decide whether to go for the prenatal tests for Downs etc and have decided that if the results show there is a problem with the baby, I would rather let nature take its course and allow the baby to live (but be looked after by someone else) rather than go ahead and have its life terminated, thinking that this would be the lesser of 2 evils.
Has anyone done this and is it possible to have a such a baby adopted/placed into care?
I have 2 healthy children already and the reason for not wanting to keep a baby who was severely disabled as it I dont believe it would be fair on them. Plus my DH would not be supportive and I have no family who could help.
thanks in advance

mm22bys Thu 08-Jan-09 16:43:45

I going to leap in here, and say this may not have been the best place to post this. Many of us do have severely disabled children whose prognosis is not good, and in many cases, there were no antenatal tests that would have shown this.

mm22bys

wannaBe Thu 08-Jan-09 16:52:49

firstly, there are a lot of posters on this particular part of the board who have severely disabled children and non disabled children so to post that having a severely disabled child would be unfair to "healthy" siblings is somewhat insensitive.

Secondly, I find it hard to understand how you could go through a pregnancy without having any tests etc with the knowledge that you would have the baby adopted if there were to be anything wrong with it. How you feel about your baby when it is born will most likely differ vastly from how you feel about the possibility of a baby while you are still carrying it, and what you feel to now be the right decision may turn out not to be once you hold that baby in your arms.

There are people who specifically foster severely disabled babies, and if you genuinely felt that you were unable to cope then it would be possible to have your baby put into care I am sure. Just how easy that would be I do not know, as it's not something that people generally have a positive view of on these boards. Try searching for messages about Julia Hollander and you will see what I mean.

geordieminx Thu 08-Jan-09 16:56:30

What happens if you have a "healthy" baby, then a few months/years down the line the child has an accident, and ends up with brain damage/in a wheel chair or gets diagnosed with cancer? What then? Dump him/her at the local childrens home?

hmm

alfiemama Thu 08-Jan-09 16:56:46

I also think this is very controversial (like you said) and like mm22bys has said perhaps not the best place to post this.

I may be off the mark here, but to me seems a very strange question to ask. Fair enough we have all prob asked ourselves whether to have the tests or not. I personally chose not to with both my boys, my reasoning for this is my sil had spina bif and it wasnt detected until a few weeks after her birth and to be very honest apart from a tiny little hole in the base of her spine, she is totally ok. Had my mil had any tests and she was told high chance of spina bif she may have decided to not have her.

Why would your dh not be supportive?

sarah293 Thu 08-Jan-09 16:58:48

Message withdrawn

wannaBe Thu 08-Jan-09 17:00:18

yes agree with gm.

If one of your existing children became disabled would you get rid of them?

2shoes Thu 08-Jan-09 17:00:34

you can give any baby up for adoption even a not damaged one.
but the sn board is mainly full of people who didn't take that option, so harly going to get answers here.

mm22bys Thu 08-Jan-09 17:02:03

If you do feel that strongly that you could not cope and that it would be unfair on your other children, and you would get rid of any problem child, then I think you should not get pregnant in the first place.

There are no guarantess in this life, and even your perfect children may not always be like that, we get what we are given unfortunately.

KerryMumbles Thu 08-Jan-09 17:03:04

fear.

that's what this is about.

Everyone has fears of one sort or another when pregnant.

You are becoming consumed by your fears.

You will love your baby when he\she is born. probably even before.

wannaBe Thu 08-Jan-09 17:03:29

oh you're a first time poster I see. hmm

Tiggiwinkle Thu 08-Jan-09 17:06:42

Strange place to ask such a question is it not? hmm

mm22bys Thu 08-Jan-09 17:07:06

I bet she's a regular poster who is embarrassed by her question, knowing that it is insensitive to say the least.

If you are going to ask such a horrible question on a board where many of us are trying to raise the very children you would get rid of at your convenience, then at least have the decceny to post under your regular name.

I wish I hadn't bothered!

Blu Thu 08-Jan-09 17:07:19

mirage - if you have decided that you would not terminate in the event of tests showing any detectable conditions, why not simply continue your pg in enjoyment, and then if at birth any conditions are present, see how you feel then?

This is pretty hard to discuss in advance- it seems that some people do have disabled babies adopted, and that there are people who adopt or foster these babies. BUT you don't know how you would feel at birth, or what condition, or what the prognosis attached to that condition would mean for yours and the baby's life.

I imagine Social Services handle fostering and adoption where people domake that decision.
But it sounds as if you are over-planning for a situation you don't even know is occurring - and also, as others have pointed ou, parents on the SN Board are the wrong audience!

Good luck with your pregnancy.

mm22bys Thu 08-Jan-09 17:08:39

....to respond to the OP, that is, in case there is any confusion

wannaBe Thu 08-Jan-09 17:15:04

there are people who do give their disabled babies up for adoption. I don't pretend to understand why but it does happen.

But imo there's a vast difference between having a baby who is disabled and deciding after the diagnosis has been made that you cannot cope and wanting to give the baby up (again, I still don't understand but still...(, and finding out before any diagnosis has been made how easy it would be to essentially get rid of the baby should it turn out to be disabled.

madwomanintheattic Thu 08-Jan-09 17:16:35

i'll just pop and tell dd2 we made a mistake and should have given her up 5 years ago because of the effect her existence has on her older brother and sister...

... or not.

perhaps a tad insensitive, but maybe a genuine q?

in a nutshell OP, reasonably easy - have you ever heard of julia hollands? google time.

pagwatch Thu 08-Jan-09 17:17:16

You might ve surprised. When you have a baby with difficulties strangely enough you do not get to switch the 'love' off.

My DS2's siblings have a very fabulous life actually and would be horrified if they thought that I could/would consider giving up their brother to make their lives more comfortable.
Amazingly enoughthey seem to love him too.

<<Pag in lovable disabled child with happy family shocker [shock>>

Actually have a look at my profile. DS2 is very severely disabled. We all look really fucked off don't we?

madwomanintheattic Thu 08-Jan-09 17:18:06

that said, we'd have made a terrible mistake - the severely disabled baby we were promised after 5 weeks in SCBU has made startling developmental strides and shocked all the paeds... hey ho.

mm22bys Thu 08-Jan-09 17:18:07

Judging by the JH case, it is as easy as leaving the baby at the hospital. In that case they must have known JH wasn't going to return, and already had a foster mother lined up when they'd had it confirmed that she wasn't going to return.

alfiemama Thu 08-Jan-09 17:19:05

If you have 2 other children, and you have these thoughts, would you not have thought the same with the other 2?

Have you spoken to anyone about how you are feeling, maybe you are experiencing pre natal depression or something.

oldcrock Thu 08-Jan-09 17:30:29

I have a severely disabled dd2 but her disabilities were not immediately obvious at birth. I would never have considered giving her up but I am just saying that you could find that things like autism or learning disabilities only become evident at a later date, by which time you will hopefully have formed a bond with your child and would not wish to give her up.

Why are you having a 3rd child if you are so happy with your perfect family dynamic at the moment?

OneLieIn Thu 08-Jan-09 17:31:42

troll definitely

Lovesdogsandcats Thu 08-Jan-09 17:33:15

geordieminx what an excellent point you make, fully agree with you.

Message withdrawn

bigeyes Thu 08-Jan-09 17:55:20

Ok, posters, lots of emotive points (rightly so) but who during pregnancy did not have such fears.

Granted the OP has posted this in wrong place and it is such horrible question but one which parents find themselves answering -some without reservation and long consideration others with much soul searching.

Not everyone feels they can be a good/confident parent in all circumstances to children with differing needs.

sarah293 Thu 08-Jan-09 17:58:24

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2shoes Thu 08-Jan-09 18:02:37

bigeyes you have a point, but not all disabilities show up in pregnacey dd's didn't.

RedOnHerHead Thu 08-Jan-09 18:05:15

I refused to have the tests, because after feeling my baby kick, disability or no disability that was MY baby that was for ME to care for - but thats just me.

Riven, how is your DD btw?

sorry-i don't unmderstand why the op has been jumped on for posting this in adoptions. she hasn't posted it in the special needs section.
do you think she shouldn't have posted it at all? does that mean we should have a list of questions that shouldn't be asked for fear of offending people? where would that lead?

wannaBe Thu 08-Jan-09 18:05:51

of course people wonder how/if they would cope. It would be naive to think otherwise - especially if they have no experience of disability.

But there's a vast leap from wondering if you would cope with a severely disabled child to making enquiries as to how easily you could have it adopted before it's even born.

2shoes Thu 08-Jan-09 18:06:17

it was in the sn topic mn hq moved it.

ok-that makes more sense.

NAB3lovelychildren Thu 08-Jan-09 18:06:54

I don't think a child with Downs is severely disabled tbh.

I think you need some counselling tbh.

wannaBe Thu 08-Jan-09 18:07:01

mmj she did post it in the special needs section. But I reported it and it was moved.

combustiblelemon Thu 08-Jan-09 18:11:27

Troll or Daily Mail shit journalist.

alfiemama Thu 08-Jan-09 18:11:36

I wish the op would come back, as there are questions I would like to ask her.

Why is she thinking to this degree? Is there something that she has come across, maybe a friend has a sn child, Like Bigeyes has said we all have thought about this question but maybe like Riven has said, not to this degree.

KayHarkerREFUSESTOSimper Thu 08-Jan-09 18:13:00

Despite the rather insensitive wording in your OP, I certainly think it's a positive thing to grant a child with a disability life.

As others have said, though, you really don't know how you will feel when you are face to face.

There are families out there who adopt children with SN, and it is perfectly possible to give up a child for adoption. But seriously, you haven't even had the tests yet. There's forward-planning, and there's over-thinking. I think you're probably doing the latter.

bigeyes Thu 08-Jan-09 18:13:51

I am a worrier and I did worry intensly throughout my pg. I have a healthy DS3. I do however teach a handful of children (mainstream secondary ) with a range of special needs from learning difficulties to wheelchairbound ages 11 to 18.

I would be scared of not coping I think if it were me and I would want reassurance how i would cope. There have been stories in media about parents of severly disabled children not coping with tragic outcomes.

Must go DS is pulling weetabix out....

2shoes Thu 08-Jan-09 18:17:26

I felt like that when I was expecting ds, but when dd came along and was disabled, I loved her just the same.
the op has 2 children already so surely knows that nothing is certain in life. would she dump one of them if they became disabled?

dsrplus8 Thu 08-Jan-09 18:18:18

see how you feel after the birth, you cant make this decision without actually meeting your LO. also remember a test isnt an indicator of how a person progresses.many kids with poor prognosis have went on to achieve great things.id rather have a happy loving child with downs than a useless misrable waste of space junkie for a child anyday!

Clarissimo Thu 08-Jan-09 18:20:14

(it should poss be noted this thread as originally in SN then moved to adoption which is why poeple were offended first)

as you were

alfiemama Thu 08-Jan-09 18:26:31

What I just dont understand, Why post this question and then not talk to us about it?

If I post something, I stick around and have a conversation about it.

Does sn maybe run in your family? (Im prob talking to myself here [gri]

KayHarkerREFUSESTOSimper Thu 08-Jan-09 18:33:11

In the OP's defense, it's entirely possible that she posted it and will return later to check for replies.

sarah293 Thu 08-Jan-09 18:42:02

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nooka Thu 08-Jan-09 18:48:48

I don't think this is that bad a thing to think about, although I agree it was the wrong place to post, and ould have been better worded. People who are considering abortions (for whatever reason) are often asked if they have considered adoption as another possibility (indeed those that chose this route are often lauded). Given that most people when presented with the likelihood that their foetus has Downs Syndrome do abort (isn't it over 90%), thinking about alternatives isn't so awful is it? Many people do wonder how they will cope, and worries about the impact on other children are a common reason not to go ahead with the pregnancy. Whether or not those worries are founded is surely another matter?

Anyway, any child may be given up for adoption. Children with Downs Syndrome are not always severely disabled, although the severity may not become apparent for a while (thinking about the LD side, as opposed to health issues, such as hole in the heart etc). Siblings can find having a disabled sibling a blessing or a curse (as with any other sibling in many ways). And having support is very important. The trouble is with the testing is that to some extent you have a choice, and if you disagree as parents that is very very hard.

unfitmother Thu 08-Jan-09 18:50:22

Troll

Blu Thu 08-Jan-09 18:52:44

DS is wheelchair mobile. wink

bigeyes Thu 08-Jan-09 18:58:57

My apologies riven and blu - point noted. I was only trying to be supportive I am sorry. In my defence though this is only how I ever see my young people.

solidgoldsoddingjanuaryagain Thu 08-Jan-09 19:22:00

OK so posting it originally in SN was a bit undiplomatic, but I think it is a question worth discussing. When I was PG with DS I had a nuchal fold scan (which showed low likelihood of Downs) and left it at that, apart from the 20-wk scan thinking that I would cope, whatever.
I will not be having any more pregnancies so no need to plan whether or not I would have tests etc but there was a time when I considered having another baby an decided against it partly because my age meant the likelihood of Downs or other problems increased. Because, having DS, I was less prepared to have to deal with a child whose needs would be very time consuming.
And should anyone in my immediate family become quadriplegic or severely mentally disabled, then I would look into institutional care for them. I think that would be a better solution than becoming a full-time carer myself as I know that I don;t have the patience for it and would end up hating the other person and myself.

bigeyes Thu 08-Jan-09 19:30:55

Having read previous posts in this thread that is a brave post soildgold and repsect you for it. I too had a nuchal scan to qwell my fears as we had already lost a non congenital twin in the same pg with my DS and wanted as much info reassurance as one could get.

fishie Thu 08-Jan-09 19:33:33

i work for a homelessness charity. we used to see a young man who was in a car accident (with his family) which left him with severe learning disabilities. his family disowned him (aged about 15) and he ended up sleeping rough.

OrmIrian Thu 08-Jan-09 19:40:21

Please give the OP a break. Maybe not the best place for it and not well phrased but I can see where she is coming from. At my 20wk scan for my last I was told that I had CP cysts and that, along with my age, meant there was a chance of Downs syndrome or Edwards. We decided to do nothing. I didn't want to terminate and we knew we would love the baby. But 'love' isn't the only factor is it? We also loved our older 2 and I had a vision of them feeling responsible for DC3 for the rest of their lives after we were dead and gone, or not able to care for him/her anymore. That was the only thing that concerned me. But IMO it was a perfectly valid concern.

solidgoldsoddingjanuaryagain Thu 08-Jan-09 19:43:11

Fishie, when you say the family disowned him do you mean that they kicked him out on the streets or that they asked for him to be taken into care? Also, without any background it's a little difficult (though it wouldn't stop stupid people) from going ooh, heartless bastard family, how could they? Perhaps the young man's disabilities made him unpredictably, uncontrollably violent to the rest of the family. Perhaps they tried to obtain good care for him but he ran away. We don't know. Do you?

sarah293 Thu 08-Jan-09 19:46:30

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KristinaM Thu 08-Jan-09 19:48:19

Hi mirage - yes it is possible to give up your baby for adoption. Your first point of contact would be your local social services, who would come and make a full assessmnet of your family situation. After your baby is born he or she would probably be placed with foster carers and then with an adoptive family.There are some agencies who will place a child with foster carers who wish to adopt - these schemes are called " concurrent planning".

Before they do this, SS have a duty to work with you to try to help you care for your baby, or if that is not possible, to place your baby within his/her extended family.

There are many families who wish to adopt a child with special needs and there is no reason to think that your child woudl not have a happy loving home with an adoptive family.

You might also be able to have some limited contact with your child, perhaps a few times a year and/or to recieve information about how they are

solidgoldsoddingjanuaryagain Thu 08-Jan-09 19:49:52

Riven: I am aware that it would take time and effort, but there must be some sort of provision (for instance, some people who become severely mentally or physically disabled due to accident or illness won't have relatives capable of caring for them at home.)
And I am not saying that you (or anyone else) should put your relatives in residential care, I'm saying what i would do.

mm22bys Thu 08-Jan-09 19:49:56

IMO, there's a difference between not getting pregnant if there is a very strong genetic chance that any further children will be afflicted with a condition (as there is in my family) and "giving up" a child if the odds don't go as you would like.

It's generally your choice to bring a child into the world, and IMO you do your darnedest to step up to your responsibilities.

You don't get rid of one of your own flesh and blood because it's not "convenient" for the rest of the family.

sarah293 Thu 08-Jan-09 19:54:13

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beansontoast Thu 08-Jan-09 19:58:29

i am nosier than i am opinionated,so i just popped onto pagwatch's profile...i love it when someone makes a point so perfectly smile

TheHamstershouldbedeadbynow Thu 08-Jan-09 19:58:38

This is a troll. Or worse a lazy journalist.

beansontoast Thu 08-Jan-09 20:01:21

quick reminder

the troll OP originally posted in S.Needs...but it was reported and moved

nooka Thu 08-Jan-09 20:10:37

But mm22bys, although I agree with you, in practice lots of people do. I guess the question is whether the OP is right. Is it better to abort, or bear your child to term and give it way? People are often told that the latter is better for so called "social" abortions. Obviously the best thing for the OP to do was not to get pregnant, but perhaps she didn't know her partner had strong issues about disability, or maybe the pregnancy was not intended. Maybe it is a troll or a journalist, but it is still an ethical dilemma.

LucyEllensmummy Thu 08-Jan-09 20:11:44

I think the OP was badly worded and has recieved a bit of an unfair bashing. I had all the general tests on offer with DD. I can not imagine EVER being able to give her up, no matter what. BUT, i had to be totally honest, i don't know what i would have done if there had been the chance of severe disability. I think, im not sure, but i think, i would have been able to come to terms with a "Downs" diagnosis as we are made well aware of positive stories. There are worse conditions that involve a child being in pain and having questionable quality of life - I cannot say, hand on heart, that i could have gone through the pregnancy with such an unknown - that is my weakness and using compassion as a reason to terminate would be to justify my own personal OMG i can't cope reasons.

In the cold light of day, not all parents of disabled children can cope, they might have learning difficulties of their own, emotional problems etc, all the myriad of shite that life throws at them - would it be fair, for these parents, to keep the child? Would it not be fairer, to the child (heartbreaking for the parents) to give that child to someone who is able to give the love and practical care that child deserves?

I think, that if you feel that you really couldnt cope, honestly and truthfully, giving up the child for adoption is the better and most selfLESS thing to do. Do we villify all people who give up their children for adoption then?

As to the OP, i think it is very easy to say that she would give the child up for adoption because the bond is not made yet and as postors have said, this comes during the pregnancy. She is dealing in what ifs, so its easy to say - well i couldnt cope with that so.......But, as many of you special parents out there who have to cope with disabilities, you do cope, somehow. Also, i should imagine that, and hope that, once a diagnosis is made, information about what to expect and what help is out there would be passed on. But what would people rather, people kept children that they couldnt cope with and ended up with the child suffering because of this, or people terminated pregnancies (as many do, and i would if i thought my child would suffer) when there are people out there who can offer love and support to disabled children - its a no brainer as far as im concerned.

wotulookinat Thu 08-Jan-09 20:15:44

We weren't offered the 12 week test thingy when I was pregnant with DS, who is now 2. When we realised we weren't going to have the test, DH and I discussed it but both agreed wholeheartedly that we would keep our baby, no matter what.
We have decided not to go for tests in any subsequent pregnancies, as there is no way I could have a termination and we would keep our children.

NancysGarden Thu 08-Jan-09 20:17:53

We refused the tests as we knew we would keep our baby no matter what.

I also find the OP offensive. If genuine there are better places to go for advice.

sarah293 Thu 08-Jan-09 20:21:32

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LucyEllensmummy Thu 08-Jan-09 20:23:21

This might be unpopular, but i actually think it is irresponsible to refuse ante-natal tests. NOT because it gives the option to terminate, but i would imagine that the reaction to a severely disabled baby is OMG what am i going to do, there is all the greiving for what might have been, the shock and disbelief etc. If you have a good idea that something is amiss DURING the pregnancy, you can deal with the OMGs etc, have practicalities in place if necessary and just welcome and love your baby the same as every one else, when he/she is born.

I guess there could be the argument that the diagnosis might inhibit bonding during pregnancy but i would imagine that if it were me, the overwhelming feeling would be one of protectiveness

wotulookinat Thu 08-Jan-09 20:30:57

good point, LEsMummy.

sarah293 Thu 08-Jan-09 20:31:27

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sarah293 Thu 08-Jan-09 20:32:01

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TheHamstershouldbedeadbynow Thu 08-Jan-09 20:33:31

Don't agree LEM - Riven talks sense

sarah293 Thu 08-Jan-09 20:36:19

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sarah293 Thu 08-Jan-09 20:38:48

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OrmIrian Thu 08-Jan-09 20:44:25

Tend to agree riven. We opted not to test. But gave in to the huge temptation to 'see' the baby on the scan. And 3rd time round that resulted in 20 weeks of worry. In fact DS#2 was fine.

The reason we didn't test was that we wouldn't terminate so why go through the stress and worry. When we did get a potentially 'negative' result we were subject to all the usual fear and concerns wich poisoned the rest of the pregnancy. To no purpose.

sarah293 Thu 08-Jan-09 20:46:36

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lardybump Thu 08-Jan-09 20:58:20

Both my parents are disabled I have been bought up around disability and the stigma that it attracts. I was bullied at school because of it and have been in trouble many times defending my parents (even though they constantly told me to rise above it).... Should they have put me and my brother and sister in care at birth because of their disability and its effect it had us??

I would not terminate or give up any child for reasons of disability. I did however have the neucal (sp?) scan but it was mainly a chance to see my baby.... My feelings for the baby would of been the same regardless of the results.

I do know that unless you have had experiance of living with a disability or with someone with a disability then the thought of it can be terrifying but surely you get over that and love your child as you would any other. I love my parents and dont see their disabilities so if I were to have a child that was disabled then I feel that I too would not see their disability only my child.....

NancysGarden Thu 08-Jan-09 21:02:35

So you can get all your grieving done before LO arrives? Sorry, I don't agree. Besides it's a personal choice.

LucyEllensmummy Thu 08-Jan-09 21:05:12

Yes - Riven DOES talk a lot of sense (as always). I have just had to help with bedtime and was thinking about a few of the things she said (before i even read them) A "negative" result, could well poison the pregnancy and that is not good for the baby. I think that irresponsible was a poor choice of words too, but i do think that if a test is non-invasive and available, i would have it done. I agree with you too Riven that disability does not mean that a child has no right to life, of course i totally abhor the very idea, and again, it is almost like eugenics. But surely you must be in agreement that there are certain conditions that would mean a baby is born to be in pain and suffer and live a very short and painful life - surely the kindest thing to do under those circumstances is to prevent that? Rather than life at ANY cost?

A friend of mine's sister has a child who has Downs syndrome. The mum had the Nuchal Scan which gave a high probability of Downs. She decided against amnio because of the risk to the baby. She loved her baby already and wouldnt have dreamed of terminating. She was however, able to come to terms with the fact that there were going to be problems. I did say to my friend at the time, why isnt she having the amnio done as i would want to know one way or the other if possible, but my friend said her sister was very accepting and just made sure she was clued up about everything. She took it that he would have DS, and prepared herself. He has had to have a few ops on his heart alread - i think he is four now. Her Sister said to me that she was never really that bothered about the Downs, more the worry of course about the childs welfare etc. Apparently he is great and im pretty sure his family wouldnt have him any other way (i don't mean that to sound patronising, but i am trying to say badly that X would not be X without his Downs and that is who he is so why would they swap that?).

I suppose everyone is different, if i were carrying a child with a disability, i would want to know, not so i could terminate, but so i was prepared. I would however terminate a pregnancy if i was told that the child would suffer.

LucyEllensmummy Thu 08-Jan-09 21:07:49

Nancy - maybe i shouldnt have said that, but i have read that apparently there is a sort of grieving period when a disability is discovered, its a documented thing. I do agree though it is a very personal choice.

I don't believe in life for life's sake, and as such, im pro-euthanasia. I can't bear to think of anyone suffering, be that a child, an old person or a dog.

mm22bys Thu 08-Jan-09 21:10:08

But you would also see other children, and look at them and your child, and think, my child should be doing what they are doing.

I don't want my children to be the best, the smartest, the richest, the most famous, I want them to grow up, do normal things, reach their own goals and dreams, be happy. For me, the hardest parts of having a child with a disability are the simple things, like watching a child of a similar age to DS2 walking down the street, holding his mother's hand, eating an icecream, knowing he'll (probably) never do that....

alfiemama Thu 08-Jan-09 21:14:18

I think both Riven and Lucyellensmummy have valid points.

But my question is, who can you trust?
when I was 20 weeks at the scan it was picked up that my ds had transposition of the aortic valves (his heart is back to front) we were told by specialist to consider termination. I am now watching my 2 year old bounding around, saying heyup cocker (his fav saying at the mo). Yes he has to have checkups but he is perfectly fine (for now anyway).

alfiemama Thu 08-Jan-09 21:17:17

Sorry also forgot to say, Lucyellen, I spent months thinking would he survive, would he not, months of pure heartache, we prepared, like you said, he was to be rushed to Alder Hey and have a corrected heart op. But when he was born, he had found a way of fixing himself (very rare I know). But I have to be honest I certainly didnt enjoy my pregnancy.

jute Thu 08-Jan-09 21:23:06

When you are pregnant with no experience of disability you imagine that when you have a child with a disability, the disability will scream out at you. Actually when you have a child with a disability, the disability comes second and you love them just as much as your non-disabled child. If you could give your non-disabled children up for adoption when they become a bit difficult then yes worry about it, if you couldn't then I wouldn't think about it.

I personally would have refused all invasive tests for DS as ds1 has a condition that is far more disabling that DS (although people struggle to understand that as ds1 looks 'normal') - his siblings were high risk for that condition (no test available wouldn't have had it anway), so no point terminating a child for DS, if a future sibling went onto have Ds1's condition anyway.

People's perspectives on disability vary. And having met someone with DS taking as many GCSE's as I took O levels (and I went to Oxford) I wouldn't count DS as automatically being a severe condition anyway.

tubeofcanesten Thu 08-Jan-09 21:28:04

Nancysgarden - your earlier post suggests there are topics you think shouldnt be discussed on MN yet you've read and posted again?

NancysGarden Thu 08-Jan-09 21:28:52

LEM I have read about the grieving process but I believe for some people it can take years. DP and I have worked extensively with adults with multiple and profound needs and both have close family members on the autistic spectrum. Our own DC is normally developing but as I say we decided we would keep baby whatever hence no need for tests. Obvious;ly they are designed for other things than deciding on a termination, but we felt we didn't want them. I would respect an individual's choice.

I also don't believe in suffering for suffering's sake but I also know there is a growing community of adults living with conditions such as Down's who would like to fight for their right to exist.

katch Thu 08-Jan-09 21:35:48

I agree with Riven about the testing. And, LEM, the medical profession can't possibly know for sure that a child will suffer - just as perfectly 'normal' babies have been terminated due to these tests, and mothers have given birth to healthy babies in spite of dire warnings to the contrary.

Heated Thu 08-Jan-09 21:48:16

In relation to the Q the OP asked, does anyone know what the stats are for children given up for adoption/placed in care who have been born with a severe disability?

jute Thu 08-Jan-09 22:01:31

Not sure heated, but children who are severely disabled are very difficult to adopt. I think many more will be in foster care.

KristinaM Thu 08-Jan-09 22:07:48

In answer to heated, i am not aware that these statistics are kept. Children come into care at different ages and for different reasons. What would be a " severe disability"? I understand that some consultants will perform terminations for things like cleft palate, which most people would not see as a "severe disabilty".

Some of the children who are placed for adoption are not born with their disabilities and many will develop a lot more problems which are special needs from being in the care system. Most children adopted in the Uk now have SN of one sort or another

ilovelovemydog Thu 08-Jan-09 22:11:22

My sister had a mosiac of Edwards. She lived until she was 5 years old. I was 18 months older.

My mother says that if offered, she would have taken genetic testing. Not because she would have aborted, but because she would have liked to have had the information.

But if the OP suggested she was going to abort, she probably would have been asked to consider adoption. So, she is considering it.

I don't think the considering adoption for a child that that one knows will be special needs is wrong.

What I do think is wrong is taking heroin, drinking to excess and adversely affecting the baby during pregnancy.

Admitting that you think adoption may be the best thing for your baby can be a kind act.

LucyEllensmummy Thu 08-Jan-09 22:13:07

katch, you do make an excellent point there. I've actually given myself a headache over this thread. Reading peoples responses has thrown up things that i should have considered before posting. I'm not sure what is the right thing to do to be honest. I, thank God, have never faced this dilemma and seeing as i don't intend to have anymore children i wont have to - i don;t think i really understand, as it is one of those things unless you have been there it is almost impossible. I agree with my own argument, but i also agree with the counter arguments put forward - hence the headache!

Clarissimo Thu 08-Jan-09 22:24:46

In reply to LEM's comment on testing-I refused all tests bar sdcans during rpegnancy with ds4. I had scans as if he needed heart care etc that can sometimes be done antenatally and as it was a home birth I would have wanted to be near a NICU.

I don't feel I was irresponsiblre at all.

I already have 2 disabled children, both on the autistic spectrum, plus an NT one. So I knew / know (as ds4 is still a baby) that any child I ahve has a high chance of non detectable disability. Testing would have told me very little about whether he was disabled- it might have ruled in or out a few disorders, nothing more. Crucially, if I had been expecting a child with a not compatible with life condition i'd still have wanted to birth and hold him at home so that wasn't a factor.

With ds3 I had all the blood tests (pre ds1's dx) and they showed him to be high risk downs, the rationale was so we could prepare ourselves. We were placed under intense pressure for an amnio which we didnt want,, so much so we buckled and went for the test but ran away whilst waiting for the comnsultant after seeing the Counsellor.

Ironically ds3 was born NT and free from downs and then regressed as a toddler and lost all speech; he is now verbal again but very severely delayed, probably always will be.

As someone who could never terminate anyway there was no value for me in having tested, just a lot of additional worry. In addition by the time I got to DS4 I genuinely felt it would send completelyth wrong message to my boys about their value as poeple. They re who they, and loved, the disability does not change that.

Some people need the tests and I can see that but the were really not for me and could have saved me worrying pregnancy.

katch Thu 08-Jan-09 22:29:41

And I forgot to say - a friend of my mother has a daughter who she only found out had spina bifida when her younger DD was studying medicine, by which time the girl was well in to adulthood (and motherhood).
I'm sure the doctors knew at the time, but for whatever reason it wasn't deemed necessary to tell her.
The only 'evidence' is a mole at the base of her spine and pigeon toes.
These days, that mother would be pressured to terminate, and may have done so 'for the sake of the siblings' or because she felt she 'couldn't cope'.

alfiemama Thu 08-Jan-09 22:33:50

Also where do you draw the line? What does the op class as severley disabled.

Apparently there is rumour of a test for Autism antenately, not sure how true this is. But that really does scare me.

If the op doent think they cope, how would they cope with the a child on the spectrum.

Clarissimo Thu 08-Jan-09 22:36:47

we were asked to gene bank for a test for asd, we said no.

asd tests would be crap and unless research has moved manifold (may have) could only tell us minor info- like if on spectrum ( kids on spectrum differ so much, wher do you draw the ine? besdies- ds1, ASD / HFA far far harder work than ds3, asd) and also there's the whole trigger thing- isf someone has the gene it may or may not be triggered.

I wouldn't touch or contribute to research with the bargiest of barge poles

katch Thu 08-Jan-09 22:38:30

And isn't having babies all about love? You love the child you've created before you see it (that's why it's so offensive when people say a miscarriage is for the best, as at least you didn't have a disabled child).
Likewise with siblings - who can say that a child is not a better person for loving a sibling less able than themseves?
And doesn't it diminish them and the love they are capable of by assuming they will only suffer from having such a sibling?

alfiemama Thu 08-Jan-09 22:39:48
sweetkitty Thu 08-Jan-09 22:42:06

I truly believe you get what you are lucky enough to be given, when we decided to have DC we wanted them no matter what sex they are and whether they would have any special needs or not.

As has been pointed out on here what if your child has an accident after birth, what then?

Clarissimo Thu 08-Jan-09 22:46:57

Well the testosterone idea intrigued me (because i've read theories of it being related to hyperemesis which I also ahd) but what theya re looking at is a gene or at best a tendency towards i think- asd is far more complex than that. Why is ds1 so much more difficult than ds3 despite a 'lesser' dx? What triggered ds3 at 3 years but was evident in ds1 at birth? Are there factors in how we raised ds2 that prevented him from developing asd? until the exact contribution of environmental factors is understood then I wouldn't give a penny for the test.

LucyEllensmummy Thu 08-Jan-09 22:50:49

Clarissmo - i totally wholeheartedly agree with you regarding the gene bank, as i think an antenatal test for autism would be just WRONG! One thing i would say is this, not all research into the genetics of autism will be solely for screening purposes. There advances in gene therapy and gene replacement, so, for example, if a particular gene is recognised as being mutated in people on the spectrum (i suspect rather a group of genes) these genes become potential drug targets and research into gene therapy also. I am not 100% on this, but gene therapy is in the clinical trials stage for cystic fibrosis - the faulty gene is delivered to the lungs of CF sufferers and has massive therapuetic value. CF is probably more straightforward than Autism though as it has been shown to be caused by a defect in a single gene. The point im trying to make is, without genetic research, this treatment for CF would never be available. That is a very different argument though, but i thought i would raise that issue with you. Might i ask what reasons you were given for the request? I have an interest in genetics is the reason i am asking.

alfiemama Thu 08-Jan-09 22:52:37

I totally agree Clarissimo, it saddens me to think this test would become available. I can honestly say, he is who I fell in love with and wouldnt change him for the world. I wish I could understand more, but wouldnt change him.

I do agree its about choices, and someone pointed out that perhaps the op has been given an alternative than to abbort but I think it was mummy2boys who said that they should think about things before the get pregnant.

I think this is where people need to be more educated and if you are not willing to risk a child with sn, then dont go down that route. naive as that sounds.

Zacksmummy Thu 08-Jan-09 22:56:19

I'm sorry to say that these thoughts occurred to me early on in my pregnancy too. My husband sounds similar to yours. I would suggest you talk about it a little more when you are both able to, timing is important. I'm currently pregnant with my second child and my first has no problems and is full of life. Some of my fear is/was for him too because there is no doubt that it would have an impact on his life regardless of feelings but the baby will take my time from him anyway. We decided that for us we wanted the tests so that we had time to consider any information given to us and to learn more if required. We agreed not to make any decisions quickly. Having the tests took away the anxiety I felt in early pregnancy, I am lucky as they haven't shown up any increased risk factors for anything. Since then I have bonded with my now kicking baby and I now know that if there is a problem detected after the birth that we will have to face it together and find a way to cope. There are no guarantees of anything but you should maybe keep your fear in perspective, all sorts of terrible things can and could happen in the future but there is no point on dwelling on such thoughts. Just think - well I'll deal with whatever happens, when it happens. That applies to good things too. (although I'm much happier thinking about what I might do if I win the lottery!)And do talk to a friend or someone else to help you get things in perspective and stop wasting your precious energy worrying you need to keep as stress free as you can at this time. Good luck

Clarissimo Thu 08-Jan-09 22:56:23

Now, it was a few weeks ago and immediately post DX so I can't remember it all but I posted about it at the time and I put

Paed asked us if we wanted to bank DNA after the dx today, for when the tests are ready.

i think it was that simple. She did say she wanted to raise it agin with us at the appt in MArch. I did wonder if its because we have 4 boys and she thinks we will ahve mroe (highly unlikely)?

LucyEllensmummy Thu 08-Jan-09 22:59:35

You raise some very interesting points there clarrisimo. There clearly is a genetic link. What i find interesting is that within one family there are children with different levels of asd. Im not sure what that tells me - that there are environmental factors? Maybe, probably, most likely - but what it does tell me is that the genetics of ASD is complex to say the least - so it has to be a result of multiple genetic causes. I am interested in this specifically because i think that DD may go on to be dyslexic or dyspraxic - lots of factors in her development have lead me to think this, but that wont of course change her in anyway.

I can totally understand why you are suspicious of research but as i say, i think the screening side of things (and i too disagree with it) is wrong, and i honestly think it will be pretty useless too for the very reasons you state.

2shoes Thu 08-Jan-09 23:02:50

2 things jump out at me on threads like these..
!) the assumption tha siblings lives will be some how marred by having a disabled sibling, I could let ds(16) post but as his veiws are so strong the language would be very colourful! that is just passing the buck imo.
2) what if like me your baby is fine in the womb, then due to a cock up at the birth thay become disable, do you then give up on them?

LucyEllensmummy Thu 08-Jan-09 23:05:31

Playing devils advocate here (sorry seem to be going off on a tangent) but i think that genetic tests for ASD would be useful post natally. I have read that getting a dx is difficult and its pretty subjective and that early intervention is really important. If there were tests available then it would be of great use. Saying that, i think that is a long way off - in the case of CF, i think there are 32 KNOWN mutations in a single gene, each requiring its own test so to get a definitive positive or negative is difficult to say the least.

My background is in genetics (not human genetics) but i remain highly suspicious of genetic tests.

alfiemama Thu 08-Jan-09 23:23:52

I have just had another look at the posting, have to say that it has been very cleverly worded to spark a debate. And I think you will all agree that it has done that.

I wonder if they get paid for it?

LucyEllensmummy Thu 08-Jan-09 23:27:36

I think it is a healthy debate though, a very worthwhile one. As i have pretty much u-turned on some of my feelings regarding prenatal testing. But i am slightly suspicious that the OP hasn't reposted.

alfiemama Thu 08-Jan-09 23:29:43

Totally agree Lem, I was the same, had my views and have still have but I can understand the other argument aswell.

It was the first posting or a name change also.

KristinaM Thu 08-Jan-09 23:31:37

yup, she is looking more like a troll...I thought i was quite good at spotting them as well blush blush

i was slightly distracted by the bollocking straight talking you hard hitting SN regulars were giving her wink. here on the adoption threads we are soft and fluffy grin no hugs or huns though

alfiemama Thu 08-Jan-09 23:36:31

I dont think anyone likes to troll bash anymore so we ignored it, but Im sorry screams of it.

first time poster/name change
posted on sn board, tut tut
even the name, prob get flamed for that one, but Mirage, all is not one seems

But I think like Lem said it made for an interesting debate so went on regardless. Just hope not a journo, like someone said.

sarah293 Fri 09-Jan-09 07:58:52

Message withdrawn

FioFio Fri 09-Jan-09 08:23:47

Message deleted

LucyEllensmummy Fri 09-Jan-09 09:39:30

Riven, unfortunately many animal rights activists are quite simply - Barking mad! He sounds like a prime example. As for your MIL i would cut her off completely.

Fio, i think this whole "debate" has highlighted that really well

lou33 Fri 09-Jan-09 09:48:28

babies do not come with receipts like toy dolls

dd1 was born with heart defects, hydrocephalus, had developmental delay and i was told she was most likely blind and deaf, as well as having the odd seizure

i was told to put her in a home and forget about her

she is a fully paid up member of the teenage society now, overcame all her health issues and had no problems with sight or hearing
ds2 was born and later diagnosed with cerebral palsy

so dd1 had obvious problems as birth and overcame them, and ds2 was undiagnosed til much later, and will not walk (he is 8 in feb)

you never know how things are going to turn out

mamadiva Fri 09-Jan-09 10:02:37

I honestly can't see how someone could say they would give up their baby because of a disability, is there any reason behind this?

If you were to give up your child for adoption you would have to be emotionally ready for that not just thinking practically
and certainly not just because of an impairment which quite frankly may be evident as a small child and be just something simple as it gets older. And at the end of the day, all children need love and a family who cares not just 'normal' ones(whatever that is).

I think you are either a very dim person or a troll out for a laugh either way you are an arse for posting on this particular section. Spare a thought for the ones who can actually be bothered to invest time and love into their children and bugger off will you.

Clarissimo Fri 09-Jan-09 11:00:49

Singer is OTT on everything ime, every single deabte we had in Uni ethics seemed to be interrupted by Prof sayng 'But Singer says <insert extremist opinion>'.

Obv. It's not a choice I could or have made but there are lots foter / adoptive parents at the sn grups we attend and I would fasr rsther a child be raised by the system than aborted.

mirage999 Fri 09-Jan-09 11:10:35

well, having trawled through the massive response, only a couple of you were perceptive enough to pick up on the fact that I am actually going against the general tide of the pregnant population by NOT considering to terminate a baby who has been found to have disabilities as shown on tests. My DH is very keen that we terminate if problems such as downs are found. He is NOT unusual in his feelings. What appears to be unusual, is that I am actually preferring to have a baby adopted if they require ft care, rather than play god and terminate it's life (like most people would do in this situation). I am trying to be realistic and recognise that if we had to care for a severely disabled child it would destroy our relationship/considerably reduce all of our quality of life and this would harm our kids (including the new baby). Of course, tragic events might happen to a 'normal' child later on in life and in which case we would deal with issues as they happen. I am simply trying to explore my options as I am not keen to have the ante natal scans/tests. Yes - I am being pessimistic for no reason, but I would like to plan in case this particular eventuality crops up.
It sounds like you are condemning the fact I would want to consider having my baby adopted? For the record, personally, I cannot understand people who have their children adopted. I would be devastated and it would be the last thing on earth I would consider doing. As someone who was adopted myself as a baby I still cannot understand how my birth mother could do such a thing.
So what I am trying to say is, I would hate to terminate and I would certainly hate to have he/she adopted - I am trying to see which would be the lesser of the 2 evils. As I am pro-life, I am just trying to consider options ahead of time should there be a problem.
Apologies for originally posting in the wrong place.

Message withdrawn

Clarissimo Fri 09-Jan-09 11:30:33

I really woulod query the bit about harming other children- personally I would prefer an adoption amssively to a termination and although I cant understand it know some people would terminate (my sister doesn't understand why telling me her preference to temrinate pisses me off when my children- her nephews- are present!)

I have had 4 children: ds1 and ds3 are dx'd asd. My 4th was born after we knew the scenario and I don't beleive he is harmed in any way.

mirage999 Fri 09-Jan-09 11:33:07

I am taking reponsibility - by anticipating and planning for the future. It would be more irresponsible not to at least consider options available. I am not talking about 'less than perfect children' - aren't we all imperfect at the end of the day? I am talking about the severely disabled who would require constant special care.
Hands up who would take into their homes, unconditionally, their elderly parents for full time care, without at least considering what other care is available out there/considering the impact on the rest of the family? I truly admire those people who do such care however, like I also admire nurses, teachers, care home staff etc. I can see I am not going to get much practical advice here...

mamadiva Fri 09-Jan-09 11:42:39

Thanks for explaining Mirage.

I think maybe your OP was just worded wrongly(or I read it wrong) which is what sparked me off. Personally I thought through all the options too but I don't thi that the tests were very reliable and neither are scans IMO, this is coming from someone who was told her DS only had one arm at a scan for it to be picked up almost an hour later that the doctor had actually failed to notice that the baby was just in an awkward position hmm, I'm not saying it's the same thing as a mental disability obv but it has put out all my faith in doctors when it comes to testing for 'defects' as they call them angry.

Don't jump the gun by saying what you will do if that happens though because at the en of the day regardless of handicap you (probably) will love that child with all your heart regardless.

I personally came to the decision that if it came back positive for downs or spinabifida I would not terminate because these people can live happy, 'normal' lives yes it may be a bit more of a struggle but as so many others have said if something happened to my child later in life would I love him any less? NO. Your child may have something wrong yes but to me, it's a struggle being a parent anyway at times so I would just have to invest more time into it so what the end result is still the same. You get a loving child who will grow up knowing you did what you could and that they are cared for by all around them.

mamadiva Fri 09-Jan-09 11:44:26

3 words-

Love is unconditional

sarah293 Fri 09-Jan-09 12:30:44

Message withdrawn

mamadiva-that is such a simplistic way of thinking. it's like 'all you need is love'-i'm sorry but that isn't true either.

i know lots of you have children with severe disabilities and you do a fantastic job of carng for them.

this is a woman who is pregnant and worried and scared and is exploring those fears. She is trying to make some sense of them in her mind and trying to find out information with which she can reassure herself.

once she has given birth, if her baby does have physical problems then she probably WILL love her and care for her. However knowing during pregnancy that if there is a problem then she has other options than being a 24 hour carer for the rest of her life, just might allow her to get through her pregnancy a little more easily.

deriding her as being heartless and awful isn't going to do any good at all.

mamadiva Fri 09-Jan-09 12:49:21

MMJ as usual you haven't bothered reading my post have you.

I didn't call her heartless or awful.

I said that she shouldn't jump the gun and decide what she is going to do if her LO has a problem, as regardless of that she will love him/her anyway.

If youd read that youd have seen that.

only my first sentence was directed at you mamadiva-i thought that was obvious.
this poor woman has been ripped apart on this thread. and i have read it.

and 'as usual'?hmm

alfiemama Fri 09-Jan-09 13:03:21

This poor women posted this is a section, which to be honest I feel is very tactless, and had I done something like that, the first thing I would have done is apologised.

Just a thought hmm

Blu Fri 09-Jan-09 13:20:17

IF someone feels they cannot adequately care for their child - for whatever reason that they feel - then an enquiry about how you go about seeking good loving care for that child is not unreasonable.

How other people re-act to the same thing is not relevant tosomeone who (for whatever reason) feels under immense pressure.

All those posters who post with anxieties about 12 week nuchal scans etc get very gentle treatment. Why shouldn't a person who feels the same fears (because it is the same fear - fear of having a baby with disabilities) also get thoughtful constructive feedback? Many women give up babies fo adoption because they feel they cannot look after them for reasons totally unconnected with disability....would you condemn every mother who gives up a baby f adoption? It's advice often doled out on MN to people who find themselves unhappily pg 'have it adopted'.

It could be to research support, or wait until the baby is born, or seek counselling for anxiety...or just to listen.

But (the inappropriateness of it originally being in SN aside) I don't see why per se a question about adopting a disabled child should arouse such judgmentalism or be decreed 'offensive'.

ilovelovemydog Fri 09-Jan-09 13:24:55

Isn't it better for the OP to admit that she can't cope with a SN child than to struggle and struggle and finally the child is taken into care?

Clarissimo Fri 09-Jan-09 13:59:16

I think in fairness Blu there are lots of postive messages buried within this thread, and it would never have come to the attention of those who would be offended ahd it not been osted in the wrong section. It's perhaps mainly unfortunate.

I am not anti-adoption for SN kids; the foster aprents and adoptive parents I know are truly fantastic. Far better that than many of their birth famillies (quite a few have FAS for example).

The answer thugh OP is that it is practically easy to arrange care for a disabled child, sadly I think often easier to get that level of srevice than suport for caring within the home, ridiculous as it may seem.

jute Fri 09-Jan-09 15:46:51

If you have a child with a disability then 99% of the time you feel exactly the same as if your child didn't have a disability (except more protective).

For the 1% who don't there's the Julia Hollander response, she's written a book, and you could read it, but I don't think her response is particularly normal or at all common, I believe it to be very unusual indeed. I can't say I recognise the things she talks about. I know many mothers of children who are very severely disabled (not DS which is not really a severe disability- usually LDs are moderate and semi independent adulthood would be the norm)- none of them have the feelings Julia Hollander talks about. I don't either.

I strongly suspect if you did have a child with difficulties then you would find that you felt just the same about them as your other children. That is the usual response. Your child isn't a disability to be dealt with, it's the child who you created and loved.

It is very possible to give your child up for adoption, however in this country it is not an instant thing. Initially the child will live with fostercarers (who may or may not be approved to adopt as well), and you have 16 weeks in which to change your mind.

I have worked with a number of severely disabled babies who have come into the care system. Some have gone back home to birth parents once the birth parents have worked things out for themselves a bit, some have gone on to be adopted or at least to look for an adoptive placement.

I don't think the OP has been given a fair hearing. Yes, those of us who have severely or profoundly disabled children do know how good it can be, we know how much we love our children and we know how much their siblings have benefited from having them in their lives. But there are some birth families who cannot commit to their child with a severe disability, just as there are some birth families who cannot commit to the child without a severe disability. It's entirely natural I think to be worried about it, to wonder how it will work, to be scared of the possibility, and to consider the future. Sometimes just knowing that there are options out there means that you can carry on yourself because you know it doesn't have to be forever - knowing that there's a number you can call and say "enough" means that you don't have to make that call.

A look at the number of severely disabled children who are adopted ought to indicate that there are a significant number of birth parents who make the decision not to parent their child. I don't think that makes them all monsters at all - and fwiw I definitely think it's better to have the child and go for adoption then to abort. But that's just me.

Oh - and as far as OP being a troll because only one post - look at the kicking lots of you have given her - wouldn't you be inclined to namechange if you were making that original post?

To the OP - call your local social services and see what they say - they may have more information, and they may also have info on support groups and other services they can offer to families who do have a child with disabilities; it may help to know you wouldn't necessarily have to do it all totally alone.

missionimpossible Fri 09-Jan-09 18:17:41

The Op would have been better off posting this thread if she had actually had a positive pre-natal test for a severely disabled baby. I think it's incredibly cold and insensitive for her toss this question out for debate .... I actually thought it was a sick joke when I spotted it yesterday hmm

pagwatch Fri 09-Jan-09 18:25:52

FWIW I only posted on this when it was originally posted in Special Needs.

I doubt very much that I would have replied at all ( and certainly would not have posted negatively) had it been posted anywhere else.

Posting it in SN is not a minor mistake. It is posting "if you were me how easy would it be to get rid of your child because i really don't want one like yours".
THAT was why she got the reply she did from me. But since it was moved I haven't responded again until now.

The placement was a mistake but an awful one.
The OP should have just asked for it to be deleted and reposted elsewhere on the board. I think the thread would have been far less antagonistic throughout had she doen so.

madwomanintheattic Fri 09-Jan-09 18:35:28

mirage - you are not going to know at the birth what your child will be like at 1, at 2, at 5, at 10... At 5 weeks old my full term dd3 was still in special care after a normal uneventful pregnancy. We were told she would not walk or talk. At 5 she is at mainstream school with no lds and some fairly minor physical difficulties. (She has cp from brain damage due to birth hypoxia).

We all try to plan in advance but with any child (especially one with a disability) there is no such thing as a crystal ball.

I wasn't kidding earlier btw (posting from sn), if you want an idea of how it can work out in the way you are suggesting, look up julia hollands. She felt she couldn't cope and left her dd in the hospital. She is still in touch with her dd and has recently published her story - it was splashed all over the papers a while ago with pics of both birth and adopted family...

madwomanintheattic Fri 09-Jan-09 18:36:15

oh - hollander, oops, got her name wrong lol...

TotalChaos Fri 09-Jan-09 18:40:13

Moral issues aside - I broadly agree with Blu's first post on this thread. I really don't see the point in upsetting yourself mulling over a situation that is fairly unlikely to happen. And if it did, as Jute and others have said, your feelings may well be very different from what you might predict.

Lotster Fri 09-Jan-09 19:52:38

I must agree that there's no guarantee a "normal" child won't get brain-damamged two years down the line in an accident, or have a problem that isn't immediately detected. For example my cousin was heavily austistic but it wasn't immediately known. There is so much importance placed on Downs, but so many other things that can happen which you won't get a test for.

I don't know what conditions if any you are entitled to apply as the birth mother when giving up a child for adoption, but if it were me I would want a loving home guaranteed before I let them go. Some disabled children are so much more vulnerable to abuse and neglect surely...

Just personally, I really think if I couldn't look after them myself I would probably feel it better to terminate (as long as done early as poss) because I wouldn't know what their fate would be, IYSWIM. But again that's just me.
And despite me thinking during the first half of my first pregnancy (now on 2nd), towards the end, I knew in my heart that I would take whatever came and love him.

Blu is right too, if you would have it anyway, why stress yourself with tests?

Good luck anyway.

nooka Fri 09-Jan-09 21:25:46

If the OP has a husband that is saying get the tests, and if it has DS, then we will abort, and everyone around her is saying the same, and she for ethical reasons does not wish to abort under any circumstances, then it is not as simple as saying, it will be OK, you will love the baby, and won't want to give it up. Parents can have very different opinions on these things, and the difference between having a child that then has problems, and choosing to have a child that you know has some problems is that the possibility to say no to that is there. That's not to say it is right or wrong to make that choice, but given that having a severely disabled child is very challenging, if you thought that you might be doing it alone, with two other young children and no support (as the OP has intimated) then thinking through options seems a sensible approach. Perhaps the OP didn't realise that her dh had such strong opinions before she had this pregnancy, perhaps she has just become old enough to be recruited into the testing regime, or perhaps the pregnancy was unplanned.

OP have you thought about contacting an adoption agency or two, and asking them what the process would be, or the DS society for more information, perhaps your dh might just be over worried, and reassurable?

sarah293 Sat 10-Jan-09 09:12:46

Message withdrawn

NAB3lovelychildren Sat 10-Jan-09 10:05:20

I can't help feeling that the OP is trying to justify giving her child up for adoption by saying she couldn't terminate. Meaning she is doing what is best for her in that that is what she could live with easier.

What about the child who will learn that his/her mother didn't want him/her as they weren't perfect? Maybe an abortion would be better in that case.

FioFio Sat 10-Jan-09 10:10:42

Message deleted

pscc Sat 10-Jan-09 10:31:44

confused- cant imagine giving my child up (having already had 2!) for adoption just because he/she is disabled??? But I suppose everyone is different, like you Riven my cousins dad developed ms very young- and his family did'nt 'dump' him!

mm22bys Sat 10-Jan-09 13:33:48

I don't understand the family dynamics either, her husband doesn't even want to try to cope with a situation he has no experience of so she is going to appease him by aborting or adopting out a problem child.

What are the daughters going to think once they learn a sibling of theirs was aborted or adopted out because s/he is disabled?

It's hard having a non-NT child (noone is pretending otherwise), but she (and he) doesn't even want to try. That's what really gets me....

pscc Sat 10-Jan-09 14:19:03

yeh- kind of reminds you a bit of hitler- sick (sorry to be so brutal- but makes by stomach churn!)

pushkar Sat 10-Jan-09 15:13:55

i think you should re consider lots of parent have children with a disability its is not the last resort to just give up that child. infact you can become emotionally attached to a special needs child and with children with downs there is considerable learning to help tham lead 80 5 normal lives . i think you are being a little premature in this idea, lots of children get removed at birth [ i am a foster carer] and a mother needs child, contact between the birth mother and the child is seven days a week you have to consider milk feeding attachment for the baby, the role of adoption takes 12 ot 18 months.
think about how you would feel at a later date, most special needs children rocover 50 % to have a pleasant life and with things like autism there is a full recovery plan. please see www.treatingautism.co.uk
it would be too quick a thought just to give up your child because they have a special need.

please reassess this situation
froma a very caring mum

katch Sat 10-Jan-09 15:14:38

It is an odd, cold attitude but sadly I think it's the norm these days- the matter never seems to be up for public debate, and tests are always presented as A Good Thing,so the other (I nearly said alternative) approach never gets aired.

mm22bys Sat 10-Jan-09 15:32:26

The problem is that so many of "us" think it's our right to have a NT, healthy child, and are too quick to, through whatever means, get rid of anything less than perfect.

Sad world we live in....

alfiemama Sat 10-Jan-09 15:55:49

If I had a husband that thought like yours, I would not be with him.

UmSami Sat 10-Jan-09 16:20:51

I normally try to be diplomatic and non judgemenntal...but i'm sorry I can't be this time....WTF?!
I'm happy to have 2 beautiful and apparantly normal children...I don't plan to have any more biological kids...
But...i'd be delighted in a few years to adopt or foster a SN child, who needs love, because someone considered them an inconvenience, felt unable to cope, whatever...(yes i felt like this before I had my 2 too)
Has the thought that that child may ruin the lives of my 2 precious babies crossed my mind? NO! because in my opinion love is always a good thing, and the more love they see and give and receive, the better, no matter the source...life isn't perfect, neither are people...but let me tell you, that it is your baby's right to be loved and cared for, not your right to have a picture perfect family...
however, to answer your question, yes you can give your baby up for adoption...thankfully not everyone thinks like you angry

pscc Sat 10-Jan-09 17:24:56

Could not have said it better myself UmSami- totally agree with you!!!
All the best!

sarah293 Sat 10-Jan-09 19:17:55

Message withdrawn

debzmb62 Sat 10-Jan-09 19:47:44

i cannot believe some of the post on here ! i have 5 kids ages ranging from 28 down to 4 years when i had my last baby at 42 i must admit due to my age i did think about down's amoungst other things tbh ,like all my babys i worried about thigs but this last one was the worse but whatever was wrong theres was not a hells chance i,d give my baby up for love nor money lucklie everything was fine now my babys 4 i,d love another sadly can,t but i,d love to adopt a child and give it the love my own kids have had healthy or disabled
how can ppeople just turn there feeling off !!

load Sat 10-Jan-09 19:52:14

I am sad.

nappyaddict Sat 10-Jan-09 19:55:09

Only read the op but yes it is possible cos lots of people do it. I don't think we are in any place to judge. Did anyone see that tv program about the woman who adopted loads of disabled children? It showed the birth parents being interviewed aswell and most of them had only given their babies up cos they could no longer cope with them and felt they would enjoy a better life with someone who could cope with them. I think they all had open adoptions and so the birth parents could still see them regualarly.

Idrankthechristmasspirits Sat 10-Jan-09 19:59:40

Hijack

Nappyaddict- i got your cat and have replied.

mm22bys Sat 10-Jan-09 20:11:34

Nappyaddict, I don't think any of us would "judge" any body who felt they could no longer cope, but the difference here is that the OP doesn't even want to bother trying...she wants any problem child given up at birth.

KristinaM Sat 10-Jan-09 20:36:35

I am quite shocked at soem of the very harsh and judgemental comments here. Just because you have a disabled child does not give you the right to say such hurtful things to a pg mum who is struggling with a dilemma. I understand that many of you are offended because she originally posted in the Sn section, but its now in adoptions

to the poster who suggested that it woudl be better for a baby to be aborted than know that their parents didn't want them...well i personally am glad that my mothers attempts at abortion were not sucessful and i survived. would i rather be dead than face this knowledge - no!

to the poster who said that if the child was placed for adoption teh mother woudl be required to have contact 7 days a week - thsi is not true. If an adoption plan was made before birth teh child coudl perhaps be placed very soon with foster carers who were willing to adopt. it woudl also be impossible in these circumstances to "provide milk" ( i assuem she means breast feed)

All you have proved to the Op is that:

if she keeps her child she will get no support from the disabled community ( as well as none from her Dh and family)

if she gives up her child she better be prepared to lie to everyone about it for the rest of her life as no one will ever understand her.

sad sad

mm22bys Sat 10-Jan-09 20:40:56

But it's not a dilemna!

She doesn't know she's having a disabled child, and she doesn't know how she (and the rest of the family) would feel once a disabled child is actually born!

I don't think I'm alone when I say to the OP, just give it all a chance, and cross these bridges if (not even when!) you come to them!

Lotster Sat 10-Jan-09 20:46:11

Having re-read this thread, I'm wondering why is it only on your third child do you have these worries? Why is your approach different to the first two pregnancies - and what was your approach with those two?

jute Sat 10-Jan-09 21:06:22

I think those without a severely disabled child have no idea and no understanding that you actually feel exactly the same about a disabled child as a non-disabled one.

Lotster Sat 10-Jan-09 21:10:59

Jute, no personal experience but I have heard parents of a couple of different down's kids more than once refer to them as the "light of their lives" in fact.

I mention Down's as it seems to be the main test the OP talks about.

nappyaddict Sat 10-Jan-09 21:20:03

I've remembered what that program was called now - a mother like alex.

nappyaddict Sat 10-Jan-09 21:21:12

I've remembered what that program was called now - a mother like alex.

stillenacht Sat 10-Jan-09 21:24:41

nappyaddict - i saw that programme and cried the whole way through. What an amazing woman and what amazing parents to admit to the not coping part.

I have a son with severe autism. I don't know if i will be able to cope forever. I do my best everyday. Its very hard. I love him. He has changed so many thoughts and ideas i had about the world i can't even begin to say.

My son is as beuatiful, funny, cheeky, tricky etc as his NT brother. The government and society think he is pointless and a drain. I don't. I think he is an education as to what life is really about.

NAB3lovelychildren Sat 10-Jan-09 21:27:43

Kristina, that was me. My mother wanted to abort me and decided to keep me in case i was a boy, I wasn't so she gave me away anyway, double whammy. thanks.

jute Sat 10-Jan-09 21:29:19

I have a son with severe autism too stillenacht (far more disabled than most children with DS). my video about him/about severe autism

Lotster Sat 10-Jan-09 21:29:41

stillenacht, you write about him with such love smile lucky boy.

I agree with what you say about him teaching you what life is really about - my fave film director Federico Fellini made films about the people on the "fringes" of society, and how looking at the way society treats them tells you everything you need to know about it.

stillenacht Sat 10-Jan-09 21:38:24

Jute - he is gorgeous xxxxxxxxxxxx

lotster - thank you xxxxxxx

At birth i had no idea i was going to end up with a disabled child, he was totally normal..but...he stopped mentally developing at 9 months and started having fits. I have pictures of him at 7 months laughing with his brother - the light in his eyes is strong and he is alert.

All his pictures from 9 months onwards have the autistic glaze when he began to go into the world away from me and DH and hid DB...occasionally the glinting eyes come back and those times we enjoy and then they return to the glaze again.

He was diagnosed with severe autism at 28 months. He is still doubly incontinent, would run in front of a car, can never be let go of to walk in the street (a big source of jealousy for me for a long time watching other mums just let their kids walk alongside them totally carefree), i feed him, he drinks milk from a bottle, his mind works on a 20 month old. He is 5. I thank God everyday that his brain has made progress. I feel lucky. Very lucky.

jute Sat 10-Jan-09 21:42:16

I couldn't let go of ds1 until he was 8 - not at all. Now he's 9 I still have to hold him anywhere near traffic, but he doesn't try and run off and away from cars I can let go. He has come on enormously since he was 7 (still no speech really, but hey ho). For us the key was him learning to imitate. I could never have imagined ever being able to let go of his hand anywhere when he was 5. He can even wait little now.

ds1 regressed between 12 and 15 months.

nappyaddict Sat 10-Jan-09 21:53:45

So many people would terminate if they felt they couldn't cope with a baby who had DS. Good on her I say for choosing adoption instead so someone else who feels they are up to the job can give this child a lovely life. Also I can understand why she wouldn't want to bond with the baby if she was planning on giving it up for adoption.

jute Sat 10-Jan-09 21:56:46

Babies with DS aren't easily adopted though. Foster care yes. Adoption, a lot harder.

Having a theoretical 'DS' is very different from having a RL baby with DS that you've just given birth to. I think that's something people are trying to tell the OP. Could you have given up a previous (presumably NT child?) if no, then there;s no reason to think it would be easy to give up a baby with DS.

nappyaddict Sat 10-Jan-09 22:00:19

TBH I don't think it's ever easy to give up a child NT or SN. I would say most people who give up a child struggle with it even if they know that's the best thing to do in their circumstances.

jute Sat 10-Jan-09 22:03:45

oh of course. I just mean that being pregnant and thinking ;
"agh I can't cope with disability' is actually very different from holding your child.

nappyaddict Sat 10-Jan-09 22:09:52

For those that didn't watch a mum to alex this is one of the birth mother's talking about when her son was born and discovering he had DS.

However I would hope that she would get a lot more support if she was to have had him now and not 20 years ago.

nappyaddict Sat 10-Jan-09 22:10:05

sorry a mum like alex

stillenacht Sat 10-Jan-09 22:37:32

have just read it and am crying again - what beautiful children. Alex has a real passion for those kids and vice versa. What a wonderful purpose.

Lotster Sun 11-Jan-09 00:02:16

Jute what a beautiful film. Your kids are gorgeous.

sarah293 Sun 11-Jan-09 09:30:04

Message withdrawn

UmSami Sun 11-Jan-09 09:49:02

Ok, I commend those people who stand in support of the OP, yes she is pg, yes it's an emotional time, yes we all have concerns when we are pregnant...none of that is wrong...
But i'm sorry, what is so hard to understand is the fact that she is already a mum of two, she knows what it is to hold a vulnerable new born baby in her arms, squished and battered from birth...she knows how much that child needs love and protection...and she knows the feeling that noone can be to your child what you can be...in my mind surely if that squished and battered baby is SN it needs love more, not less, than any 'perfect' baby...surely you want to protect it more? Or should we take the next step and provide no ressus to premies...I mean there may be problems later, and well, lets face it...the first few weeks/months are not really conducive to a smooth and 'happy' (inverted commas as I do not intend to detract in anyway from the joy that EVERY baby should bring) family life...where do we draw the line?
Whilst I know the feeling of wanting to give your child a perfect life, and protect them from all the difficulties in the world, I don't see how giving up a sn baby does that or gives your existing kids the right message...rather I read...'if you are not what I want you to be, you're out'...like I said before love is love and it is EVERY babies RIGHT.
Don't get be wrong I am not anti adoption/fostering...sometimes it is the KINDEST thing...but this is a mum of 2, and this is a scenario, this is not someone who has tried, and tried to the best of her abilities, and knows that someone else can offer more...I still read the OP as, I'm worried that this pregnancy may not fit the PICTURE of life that I have for me and my kids...therefore, if it doesnt fit i'll give it away...if you feel that way, why get pregnant? All that said, as I mum of 2, I doubt you'd feel that way on meeting your baby...SN or not.
in the words of Forest Gump! 'Life is like a box of chocolates you never know what you're gonna get!'
It may not be what you expected...but it's sweet all the same!
Now i'm off to cuddle my babies cos this thread makes me very sad and angry.

abbe1985 Sun 11-Jan-09 09:57:35

the majority of mothers on here are peol who have suffered difficult pregnancies or are trying to get through another pregnancy after miscarriage still born etc, i think it is incredibly insensitive of you to come on a site like this asking those sort of questions, im 23 and lost two babies, im now pregnant again and long to hold a baby in my arms, i will love it, n be greafull that ive managed to have a child, i think if your mind is like that why have children, just because the baby may have problems it doesnt mean it will be difficult to love, i have friends with disabled children and they are such loving characters you wouldnt change them for the world, i just hope you think twice before getting regnant again, sorry to be harsh but i feel you are very unreasonable

jute Sun 11-Jan-09 10:44:58

UmSami, but that's what I think people don't realise (and what I was trying to say with my video I guess when I made it). People don't realise that you love a disabled child every bit as much as a non-disabled one. They genuinely don't. It's why people often say stupid things when looking in from the outside (concern about the non-disabled siblings over and above concern for the disabled child- that's very common - not realising that within a family every sibling is considered equally).

pagwatch Sun 11-Jan-09 11:09:37

Jute
Love your film. Your boy reminds me of mine - cheeky little bugger grin

I can never explain that to people - that I had my son and held him and have exactly the same feelings for him ( love, affection, pride, irritation, exasperation, joy) that I do for the other two.

And that my other kids are the same. They just interact like other kids.
People seem to think that the disability causes a disconnect which stops you loving just the same.
Parents can only say " I don't know how you cope" because they feel differently about him because of his disability. If my DS1 had a head trauma and needed the same level of help as DS2 no one would say to me - "gosh how do you cope - perhaps you should think about having him adopted".

It is very strange until it is your child.
And then it is the most mundane thing in the world.

(BTW We took the kids to the National yesterday and DS2 was fine although only liked the picture of the crabs. He got a bit fidgetty at one point and DS1 came up to DH and I and said " DS2 has just asked if we could move on now because all this religious iconography is getting right on his tits. He would like to see what is in the cafe"
grin. Made me laugh)

stillenacht Sun 11-Jan-09 11:13:08

spot on pagwatch smile

KristinaM Sun 11-Jan-09 11:19:31

abbe - I'm sorry to hear about your difficult experinces. But its not true to say that

"the majority of mothers on here are peol who have suffered difficult pregnancies or are trying to get through another pregnancy after miscarriage still born etc"

the majority of posters on the SN board are parenst of SN children.

there are mothers (and others) on Mumsnet from a range of different backgrounds. many come here to ask the questions that they cant ask anyone in real life. The title of this thread was pretty clear - if you find these things upsetting them don't open them.

There are sections of mumsnet all about TTC, support after miscarriage, ante natal groups etc and you might find these more helpful.

Its not fair of you to call the Op "incredibly insensitive" because she is asking questions you dont like. Her worries and concerns are just as real to her as yours are to you.

NAB - my birth mother tried to abort me but was unsucessful ( obviously). I find that knowledge upsetting but I try to understand the circumstances she was in. I am glad to be alive and am glad she failed - i woudl not rather be dead than deal with this knwoledge

If the Op ends up having a child with SN and places that child for adoption then i feel thats its sad that the baby cant stay with his/her birth family but its good that s/he will have loving adoptive parenst. Surely thats better for the baby and parenst than the pg being terminated?

mm22bys Sun 11-Jan-09 11:20:34

Here's what it's like for a sibling of a disabled DS.....

Having a bath together last night DS1 says to DS2 "DS2's name" I love you...", and back to playing in the bath.

I didn't make a big deal of it, but it just goes to show that he just accepts and loves his brother for who he is......

Blossomhill Sun 11-Jan-09 11:24:26

Jute I totally agree with you. Some of the insensitive comments I have had about my dd are unbelievable. One mum said to me she couldn't bring up a child with special needs as she wouldn't have the patience. This is the mum whose "nt" child spits at people and is generally very badly behaved.
I also cannot believe the op is thinking this way. My dd scored a 10 on her Apgars and it wasn't until she was 1 that we noticed her special needs.
Sometimes I think people look at disabled/children with sn as 2nd class citizens and that really upsets me. We carried them for 9 months and the love I have for my dd is the same (ok I admit I am more protective) as it is for my ds!
My dd has every right to be here just as any child does.

mm22bys Sun 11-Jan-09 11:27:50

Kristina, she did post on the SN board, it was incredibly insensitive (you obviously don't have a child with SN or you would't suggest just not opening the thread) and that's why it was reported and reposted here (we'll never know what sort of response she would have got if it had originally been posted more thoughtfully and appropriately).

I don't believe in not opening a thread just because you don't like the title.....who knows, maybe someone somewhere is looking at things through different eyes now because of the discussion generated (both supportive and insupportive of the OP).

Poppycake Sun 11-Jan-09 11:32:50

I do think the OP should be able to ask the question. There are obviously some fantastic MNers who are enjoying their family life with their children with disability and all is well.

But... it's not like that for everyone. My own experience is of parents who weren't perhaps that great together in teh first place splitting once the stress of looking after a child with severe disabilities is born (and don't pretend it can't be stressful, especially if you don't have helpful relatives the lack of respite care is catastrophic) and it is all too easy for the other children to be ignored or used as respite care themselves. And life for the disabled child can also be very stressful too - even with severe mental and physical disaibilities can be very sensitive to what's going on around them emotionally, and worse not have any mechanisms for coping with that stress.

So please don't jump on someone for asking the question.

pagwatch Sun 11-Jan-09 11:40:55

can I just say FFS?

I don't have a problem especially with her asking the question. I have a huge problem with her posting it in the SN section....

sarah293 Sun 11-Jan-09 11:43:41

Message withdrawn

KristinaM Sun 11-Jan-09 11:44:36

MM22bys - i dont understand your comment about my obviously not having a disabled child - why woudl you say that???

i was suggesting that soemone who has had several miscarraiges and finds it upsetting to think about another mother giving up a child for adoption mmight choose not to open a thread ( in SN and now in Adoptions) entitled "Giving up v.severely disabled baby for adoption?"

If the poster finds the whole topic of adoption upsetting she can hide the whole topic.

KristinaM Sun 11-Jan-09 11:45:46

good post poppycake

Poppycake Sun 11-Jan-09 11:58:52

I thought about not having children at all, but was told that the risk of the problem being passed on was very small, so much so that I should be more worried about the "normal" risks than the family ones.

But I don't think I was at all unreasonable to look at the effect that 2 children with severe disabilities has had on other members of my family and wonder was I really wise. Even now, I feel like I have rolled the dice twice and been incredibly lucky, but won't do it again. I really don't feel like I'm being selfish - it is not much fun for a child to be in and out of hospital, to have to take food through a tube, to have to wear nappies all her life (finding nappy changing spots for a 10 year old is not easy), to have huge mood swings, to have to keep changing her medication (of which there is a lot) and so on and so on. Yes, I realise my girls could have an awful accident, but I really hope they don't and I really try to avoid it. If it happened, I'd have to try and cope, and I think the OP is trying to see what would happen if she couldn't. That is not unreasonable.

nappyaddict Sun 11-Jan-09 12:03:56

Of course no one is saying that you love a disabled child any less. You only have to read Nathan's mum's story to see that. She loved him dearly. She suffered terrible guilt from giving him up for adoption. But she felt she had no choice. Her family weren't supportive, her husband wasn't supportive, even the healthcare professionals weren't supportive and almost expected her to give him up. I don't think I would do it but I'm not going to condemn those that would.

mm22bys Sun 11-Jan-09 12:20:06

No she's not Poppycake, and this is what so many of us on here don't understand, she (and her husband) don't want to even try.

She did not post saying she has a disabled child, has tried for years to cope, and now can't, but she asked "is it possible or easy to give up a severly (sic) disabled baby at birth".

Big big big difference.....

nappyaddict Sun 11-Jan-09 12:26:11

There used to be a lady on here called DesperatelySeekingSanity who has an adopted dd who is severely disabled. They have an open adoption. It would be interesting to see what her opinion is of it all what with her having first hand knowledge of the situation. Unfortunately I haven't seen her around lately so don't know if she's left MN or namechanged.

mm22bys Sun 11-Jan-09 12:26:11

Why should I hide a topic?

The OP posted in SN about giving up a child like so many of us are doing our darndedest to raise ourselves. Why is that acceptable, and why shouldn't it be discussed, and why shouldn't we give our opinions about why that thought is so upsetting to us? We're the ones with the real life experience, and to post in SN about giving up a child "like ours", it would be disservice to our children not to respond.

alfiemama Sun 11-Jan-09 12:27:48

A child isnt a toy, that if it is broken (and I say this sarcastically, as I dont think they are broken, before I get flamed)we can send it back.

We are TRULY BLESSED to be given the opportunity to have children be a part of our lifes.

alfiemama Sun 11-Jan-09 12:28:37

good post mm22bys

HecateQueenOfGhosts Sun 11-Jan-09 12:38:35

From what I understand, you are not saying you couldn't LOVE a disabled child, you are saying you fear you would not be up to the job of CARING for a disabled child.

I think that if you feel you cannot give a child, any child, everything they need, then you OWE it to that child to make sure you get them someone who can. Be that adoption, respite or home help or whatever.

I think though, that your fear is born of ignorance - not saying that in a put-you-down way, but if you have no experience or understanding of certain disabilities, I suppose it can be difficult to process for some people.

But the thing to remember is that children don't come with guarentees. You have no idea if the 2 children you already have, will one day need full time care - will you give them up for adoption if so? Or will you look at other choices?

Do you really fear that you are SO incapable of looking after your child if they needed so much care - from birth, or as a result of accident or illness later on, that you would feel you had to pass that to someone else without trying to get help, support, training first? If you really feel that, then I think you would be sensible to give them up if that happened, because you wouldn't be the best person for them.

I think that you will go round in circles now, but you have NO idea how you will feel if you are ever IN that situation.

HelenBurns Sun 11-Jan-09 12:41:44

Can I ask please about a discrepancy I can see here, and do set me straight because I genuinely don't understand.

OP has received a pretty harsh response and a lot of mothers are rightfully defensive of the fact that disabled children are just as nice and beautiful and loveable as other children.

But every week at least there is a thread on the pregnancy board, asking for help in a decision about whether to abort a baby with a perceived high risk of Down syndrome or another disbility, and often these threads contain extremely sensitive responses which are utterly different to those on this thread.

ofetn also there is at least one post suggesting the OP consider adoption rather than termination.

I don't get why someone considering terminating a child with a disabling condition gets a more favourable response than someone considering having that child adopted.

I'm asking this because I often feel very upset about the termination threads (and angry) but it doesn't seem acceptable to criticise that. Why therefore is it Ok to be harsh to this OP?

Thanks

HelenBurns Sun 11-Jan-09 12:45:09

Also I feel from OP that she is probably under huge pressure from an unsupportive partner.

In circumstances like this it must be very hard to make a decision against that of the other potential parent.

I must add that I agree with many of the posts here. I personally like to think I would not terminate nor give up any of my children, disabled or otherwise. Though of course I've not been in a position where I've had to make that choice.

sarah293 Sun 11-Jan-09 12:45:58

Message withdrawn

electra Sun 11-Jan-09 12:47:38

Helen - I think the backlash has been because the OP is asking a hypothetical question, in that she is not actually in the situation as far as she knows.

27 Sun 11-Jan-09 12:50:36

Until quite recently it wasnt unusual for parents to be encouraged not to take children with disabilities home from the hospital.
I know someone who had a child with DS (30 years ago) who left him in the hospital, and has never seen him since.

Lotster Sun 11-Jan-09 12:50:37

I think because she initially posted in the SN thread, which was insensitive, then on this thread.

Also because she already has two kids and people can't understand why she's only thinking this now. She hasn't replied to this question.

Perhaps on the pregnancy thread she would have got a better response. Mind you, those threads are often by people who have been put in high risk cateogories and are feeling frightened and emotional. I don't think this lady hasn't even had any tests yet, so this highly emotive subject has been brought up (as I said in the wrong place asking the wrong people) by someone who's baby could well be fine...

Lotster Sun 11-Jan-09 12:50:55

Double x, soz.

HecateQueenOfGhosts Sun 11-Jan-09 12:55:03

HB - I think it depends on many things - where it is posted, who sees it - but mostly it depends on the tone of the op. I have seen threads on terminating a pregnancy because of poss of ds where people who have children with ds have got very upset. I have seen threads on the same subject where parents of children with ds have come on and been so understanding and supportive.

If you post a fear and ask for help and info, you will get a better response than if you post something that says people with disabilities are not worth as much as 'normal' people, or they'd ruin your life or whatever.

If the OP in this case, had said "please give me some advice, I am really scared that I won't cope with caring for a severely disabled child, I am so worried about whether I would be capable enough that I can't help thinking about adoption. Can you talk to me about your experiences please"

she would have had a TOTALLY different thread! I think the main problem with the OP was, really, the assumption that a disabled child damages 'normal' children.

If she'd have just left that bit out - this would have been so different.

HelenBurns Sun 11-Jan-09 12:56:00

Yes I see now, thankyou for explaining.

electra Sun 11-Jan-09 12:57:13

27 - a lot of awful things were and still are not unusual, with regard to the general views about and treatment of disabled people....but that doesn't make them correct or acceptable.

HelenBurns Sun 11-Jan-09 12:57:43

And Hecate - yes that makes more sense, thankyou.
Perhaps the way she put it was unintentionally insensitive.

mm22bys Sun 11-Jan-09 13:01:43

Agree, she posted in the wrong place asking the wrong people.

There's been some "support" for her here, but we'll never know what general response she would have got if she had posted here (for instance) in the first place....

27 Sun 11-Jan-09 13:03:34

electra, no of course it doesnt.
I didnt explain myself very well, just that that boy is someone I think about sometimes, being left in hospital, never knowing his family, and his mum never knowing what happened to him.

jute Sun 11-Jan-09 13:35:00

I think the story about the mother giving up the baby with DS to be very sad (from the mother's point of view- happy for the adoptive mother and the child). She sounds like Juia Hollander. Something that struck me reading JH's blog recently & the article about Alex is that both seem stuck in post dx crisis. Yes, yes we've all been there, but it is more normal to move through it. You don't stay there. They also seem to make the problems insurmountable. People mention nappies on a 10 year old (no big deal - really), or 10 years to get direct payments sorted (rubbish- a year - yes, but not 10).

Both Alex's mother and JH had dh's that certainly from their descriptions sound unsupportive. I find that so hard to understand I'm afraid, if my dh was talking about killing my child (a la JH's) or having a child adopted because of a disability, it would be bye bye husband without a second's thought. So I find their view almost impossible to understand.

mm22bys Sun 11-Jan-09 13:44:08

Me too, Jute, I wouldn't be posting on Sn or adoptions about getting rid of a problem child, I'd be posting on Legal /Money Matters about getting rid of a problem husband!

Poppycake Sun 11-Jan-09 14:40:30

Sorry, but I'm not seeing the "big big difference". My SIL would often ring in tears saying she had to arrange to get my niece adopted (and this is with a supportive family) - I found it shocking and upsetting (tho didn't say that to her, obviously, and one of the reasons she was in such a state was that she found it shoking to feel like that about her own daughter), but immediately understandable. She's not been in that sort of state for a few years now, but I think if she had known pre-birth what life was going to be like for the first few years, she would have been asking the exact question the OP asks. So I wonder is the OP merely going into this with her eyes open.

pagwatch Sun 11-Jan-09 14:55:04

It is one thing to give birth to a child, experience their particular difficulties and feel you cannot cope. It is quite another to see that your child is not perfect and bail out.

I also think your premis that people who struggle for the first few years will go on to wish they had opted out earlier is theexact oppostie from the realisty.
Most SN parent I know - me included , find that the longer time goes on the more spectacularly ordinary their 'special circumstances' seem.

KristinaM Sun 11-Jan-09 15:20:07

Really pagwatch? i guess we must be different from most people then as we have found that DCs needs became more difficult to manage over time not less.

sarah293 Sun 11-Jan-09 15:26:35

Message withdrawn

ilovelovemydog Sun 11-Jan-09 15:33:18

Riven - sorry for hijack, but what's the name of the play center in Kingswood for disabled children?

sarah293 Sun 11-Jan-09 15:45:21

Message withdrawn

pagwatch Sun 11-Jan-09 15:49:39

Kristina
I am not saying the childs issues become easier.
i am just saying that dealing with them becomes part of everyday normality.
Some of my sons peers make greater demands simply by virtue of beoming bigger. But many others ( like Ds2) throw us fewer curve balls and we deal easily now with things that were terribly difficult 8 years ago.

Nothing is ever true for all people of course

KristinaM Sun 11-Jan-09 16:05:40

we have found that just as we got on top of an issue it changes, so it never becomes " normal" for us

also that many things become much more difficult as a child is bigger.

when dc was small he coudl go in a major buggy - when he was bigger he needed a wheel chair. harder to lift, less manoverable

when he was small he went in a car seat, then he needed a special vehicle

when he was small one person could lift him. when he was bigger he needed a hoist and two people

when he was smaller he coudl go in a normal bath. when he was bigger he needed a shower trolley

when he was bigger he needed an air mattress and turning every two hours, because of his weight

there are plenty places to change a two year old, few to change a 12yo

drug regimes became more complex over time

feeding became more problematic over the years and required further surgery

venous access becomes more difficult over time & sites tissue up more frequetly

the medical provision for children with SN is better than that for " adults"

the educational provision is better fro children that " adults"

As you say, everyone's experience of being a disabled family isnt the same. and i realise that ours is very diffeent from most of yours, which is why i don't post on the SN boards.

sarah293 Sun 11-Jan-09 16:16:47

Message withdrawn

mm22bys Sun 11-Jan-09 16:19:31

KristinaM, I owe you an apology. Sorry for my incorrect assumption before.

We are all different in how we deal with things.

All the best,

KristinaM Sun 11-Jan-09 16:34:41

thanks you mm22boys, I appreciate you posting that.

riven, i knwo thinsg change for NT children we have NT kids as well. i was just saying that things for us have becoem more complex with time and not easier or more normal. but i accept that its not the same for others

we have chosen not to place any of our children for adoption but i can understand why others do

i have not chosen to terminate a pg but i can understand why others in the same or different circumstances might feel they had to

even though i am the " result" of a failed abortion, i can still understand why my birth mother did some of teh things she did

i understand that many disabled families find their children a joy and a blessing. i can also understand why others find that their marriages split up, their employers fire them and their health breaks down.I can understand why some parents kill themselves or even their children sad

we all have different experiences

solidgoldsoddingjanuaryagain Sun 11-Jan-09 16:45:13

I do think everyone has the right to consider their options and make their own choices. Because someone would make a different choice from the one you made, doesn't mean they are attacking or criticising your choices.
And if you have a family member whose physical or mental health problems mean that s/he is best cared for in an institution, that doesn't necessarily mean that you don't love the person, or that you have abandoned them.
I am thinking, at least in part, of supported living etc for SN adolescents and young adults - if you have an older child with SN (who has a normal life expectancy) there will come a stage when you have to think about what will happen when you become too elderly to care for your child - or what would happen if you died.

NAB3lovelychildren Sun 11-Jan-09 17:24:07

Kristina - clearly your mother failed in her attempt to abort you and I would expect you to rather have lived with knowing that she tried than be dead.

I feel differently about things to you.

KristinaM Sun 11-Jan-09 17:36:08

i understand that NAB. I didn't find out about the abortion attempts until i was an adult, so i think that makes it easier to deal with. Many women went through what she did prior to 1968

I don't think - oh she wanted to kill me because i was inconvenient or she hated me or hated disability

i think - she had an unwanted unplanned pregnancy, no family support, no way of raising a child, nowhere to live and no money. there was no legal abortion. she had few choices.

i think its interesting that it used to be that terminating your pg was completely unaccpetable and adoption was ok, whereas nowadays it seem to be the other way around.

sorry, i do not wish to hijack the thread. its not about my life, its about the Op. i was just sharing my experiences & feelings to show that they were different from yours

jute Sun 11-Jan-09 17:44:34

"if you have an older child with SN (who has a normal life expectancy) there will come a stage when you have to think about what will happen when you become too elderly to care for your child - or what would happen if you died."

My son will require 24 hours care for the rest of his life (normal life expectancy). I fully expect him to move out by his 20's - when he can get far more from a well run establishment than he can at home.

That's very very different from deciding before a baby is born that you're not going to do disability, or doing a JH and leaving your child in a hospital with no provision in place.

Planning for the possibility of ds1 leaving home at 19 will start when he's 14 and we will be fully involved in the decision making.

AuntieMaggie Sun 11-Jan-09 18:20:24

I only made it to page 7 of this thread but I am shocked at the harshness of some of the responses to the OP.

Yes she posted in the wrong place and has apologised for that. Perhaps it was a simple mistake and she didn't understand the nature of the other thread.

I am hoping to start a family in the next year, but I cannot say that if I have a child that is severely disabled and will need full time care especially if they will need full time care for the rest of their lives, that I wouldn't give the child up for adoption. If something happened to the child that meant it became this way later on, then I guess I would have to look at my circumstances then. I have many reasons for this, including not feeling that I'm strong enough and worrying that if something happened to me and DP my family would be unlikely to take on a child that needed such care.

I think the OP has serious concerns and is being honest and sensible in trying to educate herself in her options.

I really admire all of you that have sn children and care for them, but not all of us are as good as you are. And I think it's better to be honest and look for help rather than end up in a situation where the childs life could be made miserable due to resentment or other issues.

As for care homes - some of them are awful. But some of them aren't. I work with someone who's daughter has sn and has been in residential care for a long time. She is about 5 years older than me and loves where she lives and gets to do all sorts of things that she may not have got to do had she lived with her parents and still has a great realtionship with her parents.

solidgoldsoddingjanuaryagain Sun 11-Jan-09 18:23:55

You see, what worries me is this attitude that the parents who are aware that they can't cope and won;t be able to cope are vilified (as wicked, uncaring, selfish, inhuman) to the extent that they feel they have to keep their disabled baby rather than making other arrangements. Because these are the parents who can crack up and smother the child, when it would have been better all round for that child to be cared for elsewhere by other people.

jute Sun 11-Jan-09 18:25:24

I don't think anyone on the thread has any problem with care homes. I'm fully aware that at some stage my son will end up in residential care. He will go there when it is best for him to do so.

I think that comparing residential care to rejecting a child because of a disability, is a bit offensive really. They're nothing like the same. That's the problem I had with JH -she seems to equate what she did as being the same as someone sorting out resi care for their child when it has reached the stage of being needed. Completely different.

jute Sun 11-Jan-09 18:31:48

Not remotely what people are saying solid.

I just object to those without disabled children assuming you feel differently about a child because it's disabled. It's a view I challenge wherever I see it. And when I read about people who have taken the decision to give a baby up for adoption because (only because) of a disability, they never seem particularly convinced by their decision. I strongly suspect that given time to get over their initial shock a happier ending might have been reached by keeping the child.

AuntieMaggie's post just reads as something written by someone who has no understanding of what it means to love as a mother- she might change her mind once she has children of her own.

jute Sun 11-Jan-09 18:33:16

The fathers however, in these stories do often seem perfectly happy with having had the kid adopted.

AuntieMaggie Sun 11-Jan-09 18:36:15

I didn't compare residential care to rejecting a child because of a disability. Someone earlier made a negative reark about care homes.

KristinaM talks a lot of sense. Individual circumstances has alot to do with why people would consider giving up a severely disabled baby for adoption.

AuntieMaggie Sun 11-Jan-09 18:42:06

I didn't say I wouldn't love my child if it were disabled - but would I be able to cope? Completely different story.

Fast forward 5 years and I might feel differently because a lot of things might be different for me. But if I gave birth to a severely disabled child today? Then it's more than likely that I would give it up and my DP agrees with me.

We both have experience of disability in our family and think it would be the best thing for us.

stillenacht Sun 11-Jan-09 18:53:10

AuntieMaggie - my son fell disabled at 14/15 months of age (autism gripped him) prior to this i loved him as a NT child (or so i thought) and subsequent to this i love him as a child with SN - the love i have for him hasn't changed one iota. The care needs have tho.

stillenacht Sun 11-Jan-09 18:53:55

totally agree with Jutes comments on this page smile

pagwatch Sun 11-Jan-09 18:54:12

TBH

I think in most instances any conjecture about how you would react to the birth of a disabled child is total guff.

I can assure you that I am someone who not only would have been convinced that I could not cope but would have the avid agreement of most people who knew me that I would not cope. As it turns out I can.

I think you have to try and remember how completely witless most of us are about how we will react to the birth of our first child. Everyone says that having a child is one of those things that you never really understand until you do it.
The same as those huge things - like losing a parent. It is never how you anticipate.
Well for me that is equally true of having a child with severe SN.

I tend to regard 'planning' you reaction to things like that the same way I view people who tell me that they are going to leran a new language during their first weeks at home with a baby....

stillenacht Sun 11-Jan-09 18:57:12

agree pagwatch smile

TotalChaos Sun 11-Jan-09 19:02:57

Kristina - I am sorry you don't feel comfortable posting on the SN board, and hope you have people either on the internet or RL you feel comfortable about talking difficult issues with. a point re:growing out of a major buggy - I have a friend with a ten year old daughter with severe ASD who has got an adult sized 3 wheeler buggy for her via I think her OT department - apologies if you think I should mind my own business.

jute Sun 11-Jan-09 19:03:07

Yes agree pagwatch.

It's all very easy to sit and say 'oh I couldn't cope with a child with a severe disability' - but what you could cope with just handing over your newborn baby? Even very very severely disabled children can look & act just like other newborn babies. The love you feel for a newborn isn't based on their dazzling conversation and clutch of A grades - it's not that easy just to hand that baby over. Which is probably why the accounts from the mother's who have done that always sound so sad or not quite in touch with reality.

I'd much rather be in my shoes than theirs thanks.

mm22bys Sun 11-Jan-09 19:11:04

I don't understand the comment of Maggie's that it would be the "best thing for us" to give up a disabled child.

Parenthood is all about love and sacrifice, it sounds to me like you want a child who is going to fit in with your preconceived ideas of family life, and you're going to make sure there's no undue inconvenience.

Well, nothing will change your life as much as having your first child, even if they have no disabilties.

sarah293 Sun 11-Jan-09 19:14:01

Message withdrawn

sarah293 Sun 11-Jan-09 19:15:06

Message withdrawn

stillenacht Sun 11-Jan-09 19:19:41

totally agree Riven smile

I hate all this "special children for special parents" shite

2shoes Sun 11-Jan-09 19:23:43

good greif, so someone would dump a disabled baby!!!

JZ7 Sun 11-Jan-09 19:27:52

I just want to say that many of the previous posts offer some good points and advice.

Mirage999 you have been honest with your
thoughts and feelings and maybe vulnerable
to some of the negative commnets.

I would suggest that you relax and enjoy
your pregnancy as whether or not your baby
is ok or has a condition any stress can
impact on you both.

You could ask your partner what would he
do or feel if your children either became
disabled or ill.

If your baby does have a condition I would
connect with post-natal counselling support
service which either GP or hospital would
provide referrals.

Also there is a dual issue of some people
assuming that all mothers will feel love
for their new born with or without a
disability etc.. We all know thats not true
some parents do have a bond immediately and
other parents need more time to build a
bond for many reasons.

I think that the families who are
supporting their family unconditionally
show how perseverence and not being overly
prejudice about disability can work
successfully.

However we have been saddened by some
events where a parent with a child of
special needs has become so desperate and
taken her life and her child/teens.

No parent should be made to feel guilty
for making their decision as there are many
factors specific to the individual
sitation.

Terminiation v Adoption is not the only
option available now, parents can access
respite care or long-state care (voluntary
section). Respite is helps in 2 ways one it
gives parents/families a short breaks
through the year and second the care staff
work with school and parents on life-skills
and and life-experience.

Long-stay is an option when a child needs
24 hour care, 7 days a week that which
either includes complex health care and or
behavioural difficulties both cases can be
overwhelming for some parents to
continue. Rather than adoption long-stay is
kind of like the state adopting your
child but families can still be involved,
with outings, visits, and respite stays
with the family.

But for now just stay positive and do not
worry about tomorrow or the next,live for
today!

Cheers JZ7

Poppycake Sun 11-Jan-09 19:39:02

Just for the record, my SIL has an extraordinarily supportive family (not talking about me, her mother has been an absolute rock - partly because her own experience with a severely disabled child has meant she knows the system a bit better so she can do the fighting for rights, arguing with drs etc with the force of experience). From her posts, Kristina's experience seems to be far more analogous to our family's than perhaps other people's - perhaps it depends on the severity and type of disability. I really really really think that there needs to be a lot less judging here. It's upsetting me a lot so I'm going.

alfiemama Sun 11-Jan-09 20:11:11

If its all about the op and family not being able to cope, what if they have a child with ADHD, would they give them up for adoption then. Where do you draw the line?

The op hasn't even had any test's yet, so what is the point in bringing up a very sensitive subject, talk about forward planning. Somethings in life can't be planned for, you can't be in control of everything.

solidgoldsoddingjanuaryagain Sun 11-Jan-09 20:42:14

Look. other people do not have to make the same decisions as you. Those of you raising children with SN have made your choices - but it doesn't mean that anyone else in similar circumstances has to do the same, and if someone else doesn't, then I fail to see how it affects the decisions you made.
I could not deal with being a carer 24/7 indefinitely, either economically, practically or psychologically, so if a member of my family needed such care I would be looking out for longstay residential care for that person.

2shoes Sun 11-Jan-09 22:12:16

"Those of you raising children with SN have made your choices"

what an odd thing to say, the only choice I ever made was to get pregnant, I did not choose for my dd to be starved of oxegen at birth.

as far as I am aware no one chooses for their child to have sn.

electra Sun 11-Jan-09 22:45:50

Completely agree 2Shoes - an odd thing to say indeed hmm

solidgoldsoddingjanuaryagain Sun 11-Jan-09 23:11:17

What I mean is: you chose not to put your child in residential care/up for adoption, that's all.

2shoes Sun 11-Jan-09 23:19:43

hmmsorry that is just so stupid, I can not believe anyone would post it.
so if a baby isn't perfect you just dump it....bizare

Judy1234 Sun 11-Jan-09 23:27:03

The bottom line is that in the UK the state will indeed look after your child and you can give it up for adoption, just as a parent can choose not to be in touch with or ever see a child after divorce. We don't force relationships on people.

solidgoldsoddingjanuaryagain Sun 11-Jan-09 23:30:00

2shoes, saying that some people choose not to care for a disabled child themselves and therefore seek residential/foster/adoptive care for that child is a fact. Some people do it. Others don't.

KristinaM Sun 11-Jan-09 23:39:52

i find your use of the word " dumped" for adoption rather upsetting. i am adopted and i was not "dumped". i do know of one child who was literally dumped ie placed in a municiple garbage dump, but that's unusual

usually people say " made an adoption plan" or " placed their child for adoption". its a bit like called children with additional support needs "retarded" shock

jute Sun 11-Jan-09 23:42:18

solidgold - if you think you could easily give up your chil for adoption right now then I believe you. If you think you couldn't then I'm afraid you have no idea what you would do. We haven't given birth to a disability, you give birth to a child we love every bit as much as you presumably your love your child. In exactly the same way.

Something many miss when thinking about rather than experiencing disability.

jute Sun 11-Jan-09 23:48:12

If someone was giving up a disabled child for adoption because they thought it would be better for them, then they would need to be realistic. It takes twice as long for a disabled child to be adopted as a (supposedly) non-disabled child (I say supposedly because I know a number of children adopted around the age of 2 who have gone onto have developmental disabilities not known about at the time of placement- or kept quiet by SS). Only one in eight adopters (13%) would willingly take on a child with a “mental disability”, only one in five (21%) would say yes to a child with a physical impairment and under half (47%) would consider a child with a long term medical condition.

Yes your child might be lucky (as Julia Hollander was with her daughter) but it's not really guaranteed. And something presumably you'd have little control over.

solidgoldsoddingjanuaryagain Mon 12-Jan-09 00:08:51

Jute: with all due respect, you have no idea what I would or would not do because you are not me. People make different decisions.

nappyaddict Mon 12-Jan-09 00:49:35

only skim read the last few posts but i notice a couple of people are saying if my dh wasn't supportive of continuing with the pregnancy of a disabled child it would be bye bye dh. i would imagine the prospect of bringing up 3 young children, 1 severely disabled on your own quite daunting.

bigeyes Mon 12-Jan-09 00:51:47

I havent skim read but did post earlier and just hope OP is getting info to make an informed decision

sarah293 Mon 12-Jan-09 08:17:27

Message withdrawn

jute Mon 12-Jan-09 08:31:47

I'm not saying I know what decision you would make. I said that if you would give up your child tomorrow for adoption then I believe you.

If you wouldn't then you're doing that thing that so many people do in assuming you would feel (not think, feel) differently about a child with a disability.

As pagwatch said earlier I take comments that suggest that a mother would feel completely different about a disabled child with the same pinch of salt as those mothers who are going to work full time whilst their newborn sleeps peacefully in the corner.

nappyaddict- yes of course it would be daunting but staying with a man who wanted to kill one of his own children (JH's dh - according to dh) would make me feel sick. Wouldn't matter whether the child was disabled or not. I think I would also find a man that unable to cope with disability quite pathetic and respect is probably necessary for a relationship so it would be doomed anyway.

jute Mon 12-Jan-09 08:37:11

sorry according to JH.

2shoes Mon 12-Jan-09 08:42:09

KristinaM sorry no offence was meant. I just get very angry at the attitude, that is a baby is not "perfect" it should be (thinks of a nicer way to put it) given away. I think this kind of attitude is what corrupts the lives of people like my sevely disabled dd.

Judy1234 Mon 12-Jan-09 09:15:21

Most people keep their children and love them but it's wrong to say that a disabled child in many cases is not more of a burden. They are much harder work and you may have that obligation to care for them not just for 18 years but until you're over 80. So it's certainly not correct to say they are not in that sense a burden. All children are of course an effort and we all get a lot back from caring from them but many disabled children are more of an effort and more work, just as twins are more than one. I certainly didn't have twins and think right only wanted one so I'm handing one back but I suppose some people who have quins and already had 4 children migth think like that etc.

"Most people keep their children and love them but it's wrong to say that a disabled child in many cases is not more of a burden. They are much harder work and you may have that obligation to care for them not just for 18 years but until you're over 80."

I would personally agree with that. My elderly grandmother looked after my aunty with SN until quite recently - even after having a quadruple bypass and several heart attacks. Most children will grow up to be independant but that is not the case for a significant number of children with SN. I have seen what life is like for an elderly couple with a child with SN and it's certainly not easy - no matter how much you love your child.

mm22bys Mon 12-Jan-09 09:42:01

Xenia, I must have missed that post, who said that where about SN children not being more of a burden?

r3dh3d Mon 12-Jan-09 09:48:44

Am not going to weigh in properly because I'm sure what I really want to say will have been said repeatedly by the rest of the SN mob. grin

But ... the thing is we are a mob. There are a lot of us. Disability is pretty common and the overwhelming majority of parents do not give their disabled children up for adoption, any more than you would give your own NT child up for adoption. Yes, of course there are extreme cases where individuals cannot cope but they are very rare.

So we are not a tiny minority of self-appointed martyrs. We're just ordinary people doing what every other parent does - have a kid, love them, blunder on. Somewhere along the way we discovered there was a disability thrown in as well. And 90% of the time our kids are not a problem. Lack of services is a problem. Fighting for education and therapy is a problem. Spiteful comments in Waitrose are a problem. That's why people have breakdowns and marriages split up. It's not the kids.

sarah293 Mon 12-Jan-09 09:52:40

Message withdrawn

mm22bys Mon 12-Jan-09 10:01:20

Riven, I see alot of anecdotes are coming out of the woodwork....

alfiemama Mon 12-Jan-09 10:32:05

This is going to sound really silly, and I probably should have name changed blush
But I wonder if its a bit like propaganda and that people are fed the wrong impression, so that it never gets that far.

pagwatch Mon 12-Jan-09 10:38:30

I haven't seen where anyone said that SN children are not more of a burden.

i posted that life with a particular child becomes your normailty and ceases to be as daunting/difficult. But it is harder to parent DS2 that the other two.

<<pag tries to resist the urge to post that so many of the things that are more difficult are due to the wanky, dumb ass attitude of the general public rather than his actual needs. Pag fails>>

pagwatch Mon 12-Jan-09 10:40:10

Actually DS2 may well say with us ( with some day care so he can be with his peers) but that is because we want to have him with us. we may have to review and ensure that it is best for him as the time gets nearer.
It is another area where you cannot be selfish.

But he is so lovely

27 Mon 12-Jan-09 10:41:08

Riven

I dont think it is always a choice past the age of 18?
If you have a child with a disability and social services say they cant fund the placement then I wouldnt call that a choice.

(I'm aware that you know far far more about this sort of thing than me, but I dont think its true to say that everyone looking after a child with disabilities after the age of 18 is doing it because that is how they want things to be.)

sarah293 Mon 12-Jan-09 11:31:26

Message withdrawn

solidgoldsoddingjanuaryagain Mon 12-Jan-09 12:05:19

Riven: I would have thought that most people plan (or don't plan but decide to continue with an unexpected pregnancy) for their DC to grow up and go out into the world.

2shoes Mon 12-Jan-09 12:15:15

solidgoldsoddingjanuaryagain you are right to a certain extent they do, and I plan that my severely disabled dd will not live at home when she is an adult. all going well a good place will be found that suits her. now getting my nt ds out will most likely be a lot harder.
strangely when having children I didn't even consider when they would leave home.

sarah293 Mon 12-Jan-09 12:49:55

Message withdrawn

ilovelovemydog Mon 12-Jan-09 13:04:49

Think it may be that a lot of people don't know many disabled people, so it's all a bit of a mystery.

Seems to me too that there is a British reserve about discussing disabilities. DD (aged 2) asked a lady in a wheelchair why she wasn't walking. A man nearby said DD was terribly rude. Fortunately the disabled lady was quite happy to discuss why she couldn't walk.

LottieDugalo Mon 12-Jan-09 13:07:27

I have read through and i am angry and deeply saddened.

When I was pregnant I was pregnant with my baby I didn't know whether my baby would be 2 ft or 10 ft, red haired, blonde, clever, charming, rude or monstrous, but I did know that I loved my baby be it disabled or not, I have two children, one is severely disabled and one is not, I love them both deeply. If you are putting conditions on your baby then maybe you should think again about whether you should be getting pregnant or not.

I read someone saying love isn't everything, but it is to us some days, we have no help from our families and little respite my OH works long hours to support us and there are days when I'm so exhausted and tired of dealing with ignorant rude people that my love for my dd is all that pulls me through the drowning feeling, fwiw the vast majority of the time it is fighting for equipment etc that breaks me not my dd.

I do think adoption is much better than abortion, there are many amazing foster carers adoptive parents who give wonderful homes to disabled children.

kelly2278 Mon 12-Jan-09 13:11:49

Shocking. Somebody comes onto this board looking for assistance, and this is the response she gets...? I accept that her views may not be in keeping with those of the vast majority of the people on this board, but that doesn't excuse the responses.

To the OP: you would probably find it much harder to give up a baby, healthy or otherwise, than you expect. So, if you are absolutely certain that this is what you would do, I would suggest gritting your teeth and having the test. In my opinion, an early termination is better than bringing a baby into the world, and then giving it up. Just my opinion, of course.

madwomanintheattic Mon 12-Jan-09 13:15:11

it's a generational thing too - it's not that long since people with disabilities were banged up in institutions. fortunately the money savers, i mean govt, worked out it was cheaper for families to stay as families (and even cheaper still if they made it virtually impossible to get respite or support lol).
our own experiences of parents of children with disabilities are still relatively unknown, yes there are millions of us, but it hasn't really permeated into visibility for the majority yet.
another couple of generations down the line there will be far less angst.
<takes off rose-coloured glasses>
it just means that some attitudes seem a little difficult to cope with for those who are already enlightened lol. not that we asked for enlightenment, it just sort of happened when we weren't looking...

pagwatch Mon 12-Jan-09 13:15:38

[sigh]

this was posted in SPECIAL NEEDS ! That is why it has received such a response.
As I have said before if op had asked for this thread to be deleted and reposted in pregnancy or somewhere else more appropriate it would not have been quite so antagonistic.

madwomanintheattic Mon 12-Jan-09 13:19:30

i think trying to make decisions on a what if basis is always going to problematic.

i always assumed that if i got caught naked by someone with a camera i would cover up my fanjo and my boobs. i didn't, i covered my face. blush

you just don't know how how you are going to react until the (metaphorical) train actually hits you...

madwomanintheattic Mon 12-Jan-09 13:20:31

information gathering is fine - but don't try to make any decisions. stay flexible, OP.

FioFio Mon 12-Jan-09 13:22:26

Message deleted

TotalChaos Mon 12-Jan-09 13:23:57

agree with Fio.

sarah293 Mon 12-Jan-09 13:23:58

Message withdrawn

kelly2278 Mon 12-Jan-09 13:32:16

"[sigh]

this was posted in SPECIAL NEEDS ! That is why it has received such a response.
As I have said before if op had asked for this thread to be deleted and reposted in pregnancy or somewhere else more appropriate it would not have been quite so antagonistic."

Ah, I see. By the time I got to it, it was under 'adoption' - moved, presumably. Yes, I would have to agree that putting it in the SN section is perhaps a little insensitive! shock

pagwatch Mon 12-Jan-09 13:32:31

agree with fio
And also want to know more about the naked photo scanario...

madwomanintheattic Mon 12-Jan-09 13:32:34

it was a jape thing - all ho ho aren't we having fun yet...(not)... i was living in shared accom and having a lovely bath, and a camera appeared over the top of the (locked) door...

but once i had got over the erm... shock, i have found it a really useful lesson lol! i honestly would have put money on trying to cover 'problem areas' <of which there are many> in that situation, as opposed to covering my face with my hands and closing my eyes, but clearly somewhere in my tortured soul i don't put much too much stock on body lol... grin

fio - i thought the OP had two other children that she didn't want affected by the burden of a disabled sibling? i've lost track a bit... am i supposed to be replying to someone else now?

pagwatch Mon 12-Jan-09 13:33:32

Kelly
smile
yes - just a tad insensitive

FioFio Mon 12-Jan-09 13:37:22

Message deleted

ilovelovemydog Mon 12-Jan-09 13:41:58

speeding? smile

madwomanintheattic Mon 12-Jan-09 13:48:44

rofl @ speeding (particularly with my hands covering my face lol)

if only...

so is the OP not pg? what a bizarre conversation this is if not... i thought she was pg and worried because of an increased risk of whatever... no? totally theoretical, pie in the sky stuff?

what an odd world mn is...

solidgoldsoddingjanuaryagain Mon 12-Jan-09 13:51:37

Something that doesn't seem to have been addressed on this thread is that some conditions which show up in testing basically mean that the baby will not survive birth, or will not live for more than a few hours (and those hours will be filled with pain). Do those of you who oppose testing think that it would be wrong to terminate even under those circumstances?

madwomanintheattic Mon 12-Jan-09 13:53:46

solidgold, there was a really interesting thread about that in the sn topic in about october... can't find it though - it ran to about 16 pages lol...

sarah293 Mon 12-Jan-09 13:54:35

Message withdrawn

madwomanintheattic Mon 12-Jan-09 13:57:55

oh, someone link it - i'm rubbish - it was called 'now i know i'll never vote for this man' or something similar 16 Aug and only ten pages lol...

david cameron's decisions wrt abortion bill...

DesperatelySeekingSanity Mon 12-Jan-09 14:06:41

I am here - I have namechanged but have changed back for this. Sorry but I namechange fairly regularly as I'm not entirely comfortable with the idea of the whole world being able to read too much about me.

I read the earlier posts in this and have read some of the later ones (including NappyAddict's reference to me), but not all the posts in the middle - sorry about that.

Yes, I have an open adoption and effectively share my daughter with her birth parents. They see her regularly and are involved in her life, but choose not to be involved in the bits of her life they found so difficult to deal with when she was a baby. This way they get to just enjoy the wonderfulness of her (that sounds sickeningly cutesy, even to me, bordering on illegally hugzy for Mumsnet, sorry!) without tearing themselves apart over all her complex medical needs.

Meanwhile my daughter gets to stay in touch with her birth family - so important. You have to know where you come from in order to know where you're going I think. She does have significant learning disabilities, so I'm not sure how much she understands about the technicalities of it all, but she definitely understands that they are important people in her life and she's always happy to see them.

I am the one "in charge" if someone has to be. I am the one who makes medical decisions about my daughter's treatments. I am the one who liaises with the doctors and the school and everywhere else involved in our life. And I will probably be the one to be at her side (assuming she doesn't just die in her sleep) at the end of her life too. Her birth parents may or may not be around then - they'll have the option if there's time.

It takes nothing from our lives to keep them involved; love doesn't work like that (again bordering on mushy for MN!).

I will say this in addition - it is much easier to find adoptive parents for a baby with DS than it is to find adopters for an older child with DS. There are a wider pool of adopters available for children under the age of than for children older than that.

I notice that Julia Hollander has been mentioned more than once in light of this thread. Must reiterate that I haven't read the whole thread so apologies if this has already been said. But it wasn't just JH's husband who was considering killing the child - when JH was on Richard and Judy she distinctly mentioned wanting to smash her daughter's head against the wall herself. That's when she realised she needed to get help - to protect her child from herself as much as from her husband. Leaving the husband and becoming a single parent wouldn't have necessarily changed how she was feeling towards her baby. She said she had written about her experiences because when she was in that position she couldn't find anyone else who had been through anything similar. Now someone else is coming to mumsnet asking similar questions and also getting an eyeful for their pains.

It's an honest question - is it possible to have a child placed for adoption from birth? And the answer is yes, it is. It isn't an easy process and it's likely to be full of heartache - I know that the decision to place my daughter for adoption was very definitely the best decision for her, and so do her birth parents. But that doesn't mean they don't suffer for it too.

It isn't about the parents though - we're all adults. It's about what's best for the child. Usually, what's best for the child is to remain with the birth parents, even when the birth parents are imperfect - because who is perfect. But when that's not possible or practical, I still personally think it's better to think about adoption than abortion.

LottieDugalo Mon 12-Jan-09 14:08:50

Solidgold-My dd was not diagnosed by scan but some are 9 out of 10 hydran babies are terminated, the condition is described as being incompatible with life, she is now 2 and a half and wonderful, the Drs actively encourage termination based on decades old studies, they do not know everything. I would carry on any pregnancy to give my baby the chance to live

FioFio Mon 12-Jan-09 14:17:42

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FioFio Mon 12-Jan-09 14:18:50

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Poppycake Mon 12-Jan-09 14:25:50

I'm so glad that desperatelyseekingsanity has posted that! My SIl and I watched that Richard and Judy show in tears - it was so close to where she had been at. It has really upset me that so many parents with SN children have found the comments of the OP and others insensitive (and I realise why, of course) but then not been able to make the mental leap to see that their own comments re how much they love their babies and how well their families have coped would seem "insensitive" to people who haven't had such positive experiences. There aren't perhaps many people who have been in the shoes of my SIL or Julia Hollander (I remember JH also saying in that interview that her baby was like "an animal" - a deeply shocking thing to say, but again, I can absolutely see where she's coming from), but for those that do go through that, they need help and understanding, not judgement. And knowing that the problem that my niece and BIL have is congenital, I did "theorise" about what might happen (believe me, it doesn't feel particularly theoretical when you're doing it) - the 20 week scans were helpful, but I knew that not everything would show up and it just meant I was worried throughout the pregnancy. I hope I would have been able to cope if either of my dds had had the heart problem and all the problems that went with it, but of course I don't know. I was worried about the effect on my older daughter too, because I know how my dp feels re his brother (adores him, but feels that his childhood and his siblings' childhoods were blighted by the fact that his parents had such a tough time. His mother was and is fantastic with her son and granddaughter, but it doesn't change the fact that life with a child with severe disabilities and behavioural problems is hard for all that are involved. I think especially for the other kids, who never got to make any decisions.)

FWIW, it's a bit daft talking about "SN children" because it covers so much. I wonder how much this debate is so heated because we're talking cross-purposes.

DesperatelySeekingSanity Mon 12-Jan-09 14:38:37

I was and remain a fostercarer. As far as I'm aware there's no reason why I can't have birth children, never tried though.

I've fostered a number of children with disabities. I don't do respite as in 1 weekend a month type respite, but I've had a fair few children come to me for shorter or longer one-off periods of time - anything from a week to allow birth Mum to recover from surgery to six weeks to allow the birth or adoptive family to have a complete break and draw breath, make plans for how they can continue to parent their child (and to allow SS to set up a much larger care package for the family).

Most of the children I've had have come on short notice at the birth parents' request - usually a phonecall to SS at the point of desperation when they simply cannot struggle on for a minute longer. Time to recharge batteries and a wakeup call to SS who sadly do seem to manage to suddenly find regular respite for the family when apparently none was available before. The vast majority of the children have then gone home to their birth families, although a couple have then bounced back into care at a future time.

Mostly I take children in on the understanding that they either go home to birth parents or they stay with me - I don't like doing bridging placements (preparing a child for adoption). I have done that a few times though when it simply has not been possible to commit to the child on a permanent basis given the other children I already have placed permanently (for example, I could not offer a permanent placement to an extremely profoundly disabled baby who spent 70% of his time in hospital because at the time I already had two profoundly disabled children at home, and no back-up nighttime care. I could be a parent to that baby when he was out of hospital, and visit him in hospital, but I couldn't stay overnight with him. So we carried on like that - not perfect but ok - until a carer was identified who was able to stay with him in hospital, much better.

I am truly sorry that some children get bounced around. FWIW I don't consider 2 placements (i.e. one "holding" placement and then one permanent placement whether that be permanency through adoption or fostering or anything else) to be bouncing. But when a child drifts from placement to placement that is horrible. I am in touch with a number of fostercarers though and we all do our very best to avoid that happening. It's not my experience that children with disabilities are moved on and on and on - in fact their placements seem to be more stable than many mainstream placements.

Oh, and thanks for saying I don't need to answer! Hope you don't mind that I did.

FioFio Mon 12-Jan-09 14:42:23

Message deleted

AuntieMaggie Mon 12-Jan-09 14:56:16

Gee thanks for all the understanding comments hmm

I'm sorry if you think my comments sounded patronising, they weren't meant to be.

But how typical that rather than try to understand where the poster may be coming from people jump on the way people word things and the language they use and assume they are being offensive for the sake of it instead of making a mistake like the OP did in posting in SN. I wouldn't have known not to post something like this there because I don't use the topic and the title would imply all SN related matters.

"I could not deal with being a carer 24/7 indefinitely, either economically, practically or psychologically, so if a member of my family needed such care I would be looking out for longstay residential care for that person."

I completely agree with this statement. At this moment in my life I couldn't. As I said before at a different time in my life I might feel differently. But at the current time yes we do feel that if we ended up with a child or a relative that needed this level of care it would be the best thing for us (me and DP) to make other arrangements for the child.

BTW I may not be a mother but I do know how hard it is to bring up a baby having cared for my sister who was born when I was 15. I'm not naive enough to think that my feelings might change if I had a child with severe disability or to think that I won't love my baby when it's born if it does have a disability because of that. However, as previously said, I have a relative who needs long term care as does DP so we are also fully aware of the care and commitment needed.

I think the accusation that putting a baby up for adoption is like dumping a baby is pretty insulting, not only to those that have given up children for adoption or considered it but also to the children themselves.

I think that the OP deserves more support than what she is getting on this thread currently. Nobody here knows her full situation, only the little she has said. If she thinks that adoption may be the best option for her then I don't think she should be shot down in flames for that. She is looking for advice not insults. Ok, so her fears may be unfounded at the moment but what if the baby does have a disability when it's born and she needs advice - where is she supposed to go? What if she changes her mind but her husband doesn't? Why should she come here for advice after the slating she's received?

madwomanintheattic Mon 12-Jan-09 14:59:48

she can come back to sn auntiemaggie...

jute Mon 12-Jan-09 15:14:51

Well I don't think that parent's of severely disabled kids are the best placed to give advice on placing your disabled child for adoption. Just as parents of children with DS are not the best people to ask about termination for trisomy 21. Probably posted originally under adoption it would get a helpful response.

Thanks for that DSS- interestingly just had (an unrelated) conversation with a SW about foster care and she said that shortage of foster carers is a massive nationwide problem (she was talking child protection rather than disability). Do foster carer's tend to 'specialise'? (eg disability vs short term for troubled families etc). Difficult job for not much pay.

I'm sure in her book JH talked about her dh wanting to kill their dd, he did come across (my interpretation of her writing) as being very anti even trying. The thing that really strikes me about the things she writes though - everything I've read written by her regarding Immie- is that she seems far less happy than the parents I know who have children just like Immie (or Tania (name?iirc) Immie's foster carer come to that) Parents of kids with PMLD 's at ds1's school are happy, not tortured or angsty or anything else negative really. When I read JH I get the feeling she's still trying to convince herself of her decision; I sort of get left feeling like I want to shake her and tell her she's missed the entire point of parenthood and that if she'd followed her instincts she would probably have been a lot happier.

FioFio Mon 12-Jan-09 15:23:09

Message deleted

sarah293 Mon 12-Jan-09 15:44:35

Message withdrawn

DesperatelySeekingSanity Mon 12-Jan-09 16:38:47

Yes I've read the book and don't dispute the fact she said her dh wanted to kill Immie - I just thought worth mentioning that she was also having those thoughts; i.e. it was just him.

Fostercarers - many fostercarers do specialise yes - for exmaple there's no way I could take on troubled mainstream teenagers; that isn't where my skills (or interests frankly) lie.

As a fostercarer when you go through the approval process you can decide which types of fostering you want to to - respite, short term, long term, bridging, any or all of the above. You think about the age range of the children you could foster - some will be better matched with older children, some with younger, some will be able to take children of any age. And you think about disabilities and other challenges the child might come with and what you think you can cope with. Oh, and how many children you can foster too! Unless there are exceptional reasons (e.g. large sibling group) it's not possible to foster more than 3 children at any one time - although you can have as many birth and adopted children as you want on top of that, and you can have lots of part-time fostered children too, just not more than 3 in the house at a time.

Saint2shoes Mon 12-Jan-09 16:53:30

By ilovelovemydog on Mon 12-Jan-09 13:04:49
Think it may be that a lot of people don't know many disabled people, so it's all a bit of a mystery.

Seems to me too that there is a British reserve about discussing disabilities. DD (aged 2) asked a lady in a wheelchair why she wasn't walking. A man nearby said DD was terribly rude. Fortunately the disabled lady was quite happy to discuss why she couldn't walk.

how l;ovely, I wish little people would speak to me or dd like that.

alfiemama Mon 12-Jan-09 16:59:26

I think it is the man nearby that is rude, like saint2shoes has said, I think its lovely.

edam Mon 12-Jan-09 17:17:50

I gather one of the factors in the severe shortage of foster carers is the requirement for foster children to have their own bedroom. Property prices/shortage of council housing has been a big issue over the past decade. That's why children from London end up in Margate, where property is cheap. Clearly there are good reasons for kids having their own rooms but with property prices as they were, it's been a real headache (I am told by lots of people in SS).

Sadly sometimes people do leave disabled babies in hospital and walk away - one of my friends is a neonatal nurse and it's not that uncommon for them to have babies in Special Care who don't need medical intervention but have just been left.

pagwatch Mon 12-Jan-09 18:46:26

2shoes
oh god yes!
DD is now 6 and i love the open uninhibeted way her peers have of figuring DS2 out. They just ask "why can't he talk" "why is he doing that".
It is just so much easier ...
And even better once they know they don't give a toss. Que DS2 age 12 playing fairy games with DD and 12 of her friends at her birthday party

pagwatch Mon 12-Jan-09 18:47:03

oooeeer - I went all mediteranean. I meant cue not que?

UmSami Mon 12-Jan-09 19:37:03

Well I had to come back to this thread...its like a train wreck, you can't look away...it still makes me sad and angry...i've reaad more this time and I still can't understand where some are coming from.
For the record...Yes i agree adoption is better than abortion, but in my mind NEITHER is an option...
To those so caught up in whats best for them...being a parent is about whats best for your baby...and in my mind your babies your baby from the point of conception...regardless of sex, hair colour, IQ, or health...the term is unconditional love! (that said I am not anti-abortion in exceptional circumstances...I just don't see a SN diagnosis as fitting that criteria)
JUTE: whats this film you've done? It sounds like something I'd like to see smile

jute Mon 12-Jan-09 20:01:09

oh no I'm embarrassed to show you now UmSami. I linked to it earlier. It's only a YouTube thing. Film sounds a bit grand!

Here anyway

alfiemama Mon 12-Jan-09 21:02:33

OMG Jute, hope you dont mind, I took a little peek, that is amazing. What a fantastic portrayal. Im not just saying this, I thought it was brilliant and the op should watch that deffinately.

jute Mon 12-Jan-09 21:10:31

Of course I don't mind Alfiemama. I work with the severe end of the spectrum now, and these kids are so fantastic. Obviously I can only use my son's photos, but the video is true of any of them really. They're a great bunch.

electra Tue 13-Jan-09 15:14:20

jute - I've only just seen this. What a lovely video smile xx

UmSami Tue 13-Jan-09 20:46:23

Jute - What a lovely film, and what a beautiful boy you have...you make your point very well... smile

Tracy888 Fri 30-Jan-09 23:21:03

In answer to the original question...
practically yes it is rather 'easy'.
You would have to inform the local social services department, who would arrange for your child to be placed in foster care in the interim period. As the parent with PR you would have to sign some forms giving your consent for your child to be placed in foster care. As your decision is a momentous one, it would not be taken lightly. You would be visited and spoken to by your child's allocated social worker over a period of months, to ensure that you are clear and sure about your decision. An adoptive placement would then be identified for your child, your views on what type adoptive placement you would want would be taken(eg two parent, religion, etc). An an adoptive home would be identified and then arrangements would be made for the child to move. Nowadays adoptions no longer involve no cotact. There is usually a minimum of letter box contact, or direct contact with the child and his/her adoptive parent(s)(but you wouldn't have to have any contact if you did not wish to). Hope that answers your question!

mogwai Sat 31-Jan-09 20:43:49

Jute, your son is just gorgeous.

averynaughtyboy Thu 24-Jun-10 15:42:04

This is an interesting post. I know I'm digging it up from the dead here, but it seems kinda relevant.

I suppose the problem a lot of people have with the OP is that she wanted to know how easy it is to give up a disabled baby before he/she is even born.

Whilst that might seem cruel, it's a valid point in many ways.

I have a disabled son, nearly a year old. I'm confused about so much. In many ways he's amazing, but I'll be honest with you, he's ruined my life. My wife is unstable at best, I look strong on the outside but inside I feel like I'm finished. Every day I wonder what it would be like if he was dead, and what it will be like when he does die, and whether my life is better for having known him, or whether it's been ruined by it.

I still love my wife, but it seems to be more of a respect thing than anything now. That whole side of our lives seems to have gone. She struggles to cope with him, maybe it's partially because she's with him all day. When she goes back to work it could be different. Doubtful though. Don't get me wrong, it's not the fact she doesn't have time for me any more. I fully understand what she's going through. But I think she thinks it's easier for me, and in many ways it is, but at the same time I'm being doubly screwed as I have both their problems to deal with. I know that's selfish, and I know this is Mumsnet so I'll probably be chastised it for it, but hey ho.

The worst thing is, when she loses it with him, I'm hugely protective of him... when it happens I hate her for it.

I'm torn between loving them both, and hating them both. Sometimes I wish both of them were gone, sometimes I wish I was dead. Shame as my life used to be amazing, guess this is karma somehow.

averynaughtyboy Thu 24-Jun-10 15:46:07

Also, it's probably worth noting, that yes, as you can probably read, this is one of my low points.

We've been dealing with this for the past 4 months or so with no support from the NHS, no counselling, nothing... just a bad diagnosis, a bad prognosis, and some very dark times.

I guess the original point of my post was that, for everyone who says "yes i agree adoption is better than abortion, but in my mind NEITHER is an option", then you're either

A) a very strong person who has experience of this type of situation

or

B) someone who has absolutely no idea what they're talking about

sarah293 Thu 24-Jun-10 15:54:57

Message withdrawn

averynaughtyboy Thu 24-Jun-10 15:59:04

Excuse my ignorance but what's SN?

sarah293 Thu 24-Jun-10 16:04:49

Message withdrawn

mommmmyof2 Thu 24-Jun-10 16:06:14

I think it is a very heavy question, but i guess sometimes some people don't no where to ask! on here at least you have had honest answers. I have 2 children and was scared about things like that as my husband has a lot of family members who have disabilities.But i do not think i could give my baby away no matter what! but that's me, i do have alot of support and my husband would be there for me and all 3 children.
But however people do have different situations and if you really thought then you could not cope, then yes in the end it would be the best for the baby. Better to be looked after by someone who can look after the child.
And for all the parents on here who do have children with disabilities then i appreciate how this post could be offensive, but maybe you should reasure others and give advice. Just saying as i can only imagine how hard it would be,

mommmmyof2 Thu 24-Jun-10 16:13:30

oh no can't beleive you can say that averynaughtyboy, if you secretly think that then why are you there! a part of your negativity may not be helping to your wife!
wow your poor son, he never asked to be born into this, maybe you should put yourself in other people's shoes before you comment.

sarah293 Thu 24-Jun-10 16:13:33

Message withdrawn

It sounds like you are depressed, have you spoked to anyone about your feelings? gp etc?

amothersplaceisinthewrong Thu 24-Jun-10 16:21:36

trip trap

sarah293 Thu 24-Jun-10 16:24:22

Message withdrawn

mommmmyof2 Thu 24-Jun-10 16:34:27

i think you would need to be deppressed to say those things about your own family, sad really, maybe both you averynaughtyboy and your wife should seek some advise, well if you can

averynaughtyboy Thu 24-Jun-10 16:44:51

No Riven, we don't normally get any respite. We don't have parents/relatives here. Luckily we will see grandparents this weekend which should allow us some time to ourselves.

And yes, I absolutely agree, it's him who has been dealt the shitty hand. That probably makes the whole thing worse, adding a feeling of selfishness for feeling like my life is over when his hasn't even started and probably never will, at least not as I hoped it would. But I do love him, a lot of other people do too, he's a great little guy and in fact he hasn't really ruined my life at all. I guess the problem is that we had a "perfect" life before, and whilst in many ways it still is, it's just different. Selfish again I know, but having a baby was meant to complete our lives, not add the depression/negativity/fear of the future etc that it has done.

Thanks for your answers anyway. Yes they have helped, and not it's not a trap.

Yes, BurningBuntingFlipFlop, I probably am depressed. I don't have any other experience of a similar situation but I imagine it's quite common for people to be depressed when they're told their child is likely to have severe learning difficulties, may never walk or talk, and will most likely be dead by the age of 20. You'd expect the NHS might offer some kind of counselling/therapy but so far it appears they don't. I'm sure they will eventually, but it's a good job we are strong-minded - I can understand why people less well supported than us might have already taken more extreme measures.

mommmmmyof2... i'm glad your life is all roses. Did you read my post? I'm not negative towards her, or around her. That's probably half my problem. I spend most of my time battling her negativity with a sunny, positive, "it'll all be alright" attitude. But it won't be alright will it? Who's shoes exactly should I put myself in before I comment? The whole reason I found this thread was that she said we should look into having him adopted earlier today, and that sent me over the edge. It's the first time I've cried for a few months, and it's the first time I've really struggled with our situation for a while. Posting on here probably wasn't a great idea in this state of mind.

mommmmyof2 Thu 24-Jun-10 16:58:48

my life is far from roses, i do not have experience in bringing up a disabled or ill child an in that respect i do feel for you,
although i stick by what i said, yes you proberly are at a very low point, but its not what your saying its how you are saying it. Saying a child has ruined your life is very harsh, to me that is a hard thing to say.
But don't get me wrong i am no angel and there are days where i am glad to get away from them. I was speaking about putting yourself in you wifes shoes.
you say you think she thinks you have it easy..has she told you that?i am not in any way trying to make you feel worse because i have nothing to gain by doing that. But i do think you need to talk to someone, have time with your wife.Having a young child is hard at the best of times, tiring and you feel it will never end, and i don't agree you should take the strain of everything that is not going to help
but beleive me or not i do hope you and your family get through this.I think you can do it but you and your wife need support.

sarah293 Thu 24-Jun-10 17:01:48

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your son hasn't ruined your life, what has been ruined is the life you thought you would have

i think that we all have an idea in our heads of how our lives are going to be once we have children. I don't suppose many people feature severely disabled babies in there either... you never think it will happen to you

and then something happens and that baby is born and it isn't the baby you thought it would be. and that idea you had of how life was going to pan out is just shattered

your life isn't ruined though... your life is the same as it was before. you have a lovely wife, and now you have a lovely son and you'll work out how it all fits i'm sure....

ledkr Thu 24-Jun-10 18:01:11

You are very honest avnb.That may not be a bad thing as at least you are not bottling it up.I really do feel for you all and i have no experience of caring for a disabled child apart from my fab sis in law who had a downs daughter at 29. She struggled to decide what to do but then decided to carent her baby and she is sucha good role model. She has two older dc and has continued to work part time.She finds it hard work but i think what has really helped is that she has made a real effort to still have the "nice life" you are talking about. This is different for everyone but for her it has meant still having a night out or a party and keeping in touch with her friends days out for the kids and with family and even holidays.This does seem to carry her through life but she still finds it hard and often has a few tears after a few wines.She is such an inspiration to me and her partner too.I am going to see her tomorrow and will show her your message and she may be able to offer you some support from time to time.Also keep pushing for the support and respite and try and do a few things from "the nice life" every day if possible. Good luck and i am thinking of you all.

sarah293 Thu 24-Jun-10 18:32:22

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CheerfulYank Thu 24-Jun-10 18:44:46

What Riv said, as usual.

I don't have a child with SN (yet, we're looking into possibly adopting at some point) though I have a cousin with DS and another with CP. My cousin with CP wasn't supposed to live the day she was born. I was only 2 but I remember rushing to the hospital to look at her through the glass, so that we could see her before she died. Then she wasn't supposed to make it to her first birthday. Then she wouldn't ever go to school. Then she was supposed to die before her 10th birthday. Then before she graduated...I've lost count now, but I did just buy her a card for her 26th birthday awhile back. She lives at home and works at a preschool for little ones with SN.

My aunt always said, "It's one of those things you think you couldn't possibly do, and then you look back and realize you have."

maryz Thu 24-Jun-10 21:01:16

I think there are many people who have children with SN who have imagined what their life would be like if their children had never been born, or if they died. It is something that is very difficult to admit (especially to yourself). I know that my life without ds1 would be entirely different - I wouldn't spend my entire time worrying myself sick, and unable to enjoy my other children. I have fantasised about what would happen if he just disappeared off the face of the earth.

I think your honesty is a good thing. You are probably at your lowest, so the only way is up. As your son gets older, his needs will change, and even if he remains very "needy" things like respite care and outside help will kick in. For the moment you, and your wife, need support.

What you are feeling is entirely valid and you shouldn't be ashamed of feeling it. I think you should go to your gp and investigate depression. Then go and talk to someone - counselling for me has helped immensely. Just being able to talk about my fears and my needs has helped me to cope with every day life.

Post on the special needs boards here and you will get a huge amount of help and advice which is more practical that what I can offer. Don't just give up and go away. You can get help to cope with what life has thrown at you.

And what Riven said - it isn't fucking fair sad.

averynaughtyboy Fri 25-Jun-10 00:27:42

Thanks all, appreciate all your kind words

To be honest I'm probably not at my lowest - that was when we found out. Today was a bad day though and in hindsight posting was probably a bad idea, although as ledkr said, i am quite (too?) honest about how i feel.

Normally, if there is such a thing now, i'm quite positive generally. Like someone else said (sorry, i'm tired and want to go to bed!) i know i have a good life generally, i love my wife and my baby no matter what, i have a good job, nice house and all that crap. I don't want for anything else, except a "normal" baby and normal family life. Nothing's going to change that, but nothing's going to change the way things are.

Riven - you're an inspiration. I hope you don't take this the wrong way, but by the sounds of things you have it even harder than i do. Yes, my dreams are shattered at the moment, but i have a lot to be thankful for and a lot to look forward to. For me i find it hardest when DW (hope i got that right) is having a hard time, she can be very negative about the whole situation, and i know where she's coming from, but it can be depressing. Normally i don't let it get me down, and i am the positive one, but it's hard sometimes.

We absolutely both know we need counselling of some kind, and we'll get it. I'm sure we'll come out the other side better off, it'll just take time i guess.