Ignorant Guardian article.

[eidsvold]

Anyone else read the 'confessional' in the guardian magazine today???? My dh saw it before I did and suprisingly he felt compelled to write to them to provide a more positive view.

Basically the story is about a woman who decided to terminate her pregnancy as the baby was shown to have downs ( amnio) and a heart defect. So you can imagine how that went over in our household. Some of the info told to her by medical professionals was appalling in terms of ignorant and ill informed. Whilst I want to feel sorry for the woman - I can't.

I am in the process of reworking our family story to send to the Guardian in the hope they will think about what they have written and be prepared to provide a more balanced view.

Even sadder to note that next week is Down syndrome awareness week - Good onthe guardian for helping to break down stereotypes and stop misinformation!!!!(NOT)

Feel free to join us in writing in to complain - if you get to read it.

My thoughts are that in this horrible world which we live in, everyone strives to be perfect. To have the perfect body, perfect face, perfect IQ. And if you are less than perfect, you can now fix it. Children with special needs remind us of our own imperfections, they remind us that though we are human, we are still subject to nature, nature chooses the sex, hair colouring, height, etc. We try our best however to beat nature, to enforce our superiority over the animal kingdom.

We all want our children to be perfect, and some people go to extreme measures to attain this. But in doing that I think we are missing something. Every child is special and unique, and to judge a child because of a disability says something about ourselves. All the children (and adults) I know with special needs are the most loving, affectionate, all-accepting people you could ever wish to meet. They have no barriers, if they want to hug you they will, they are perfect in ways that we are not. We have a lot to learn from them, but they are lessons we don't want to learn.

Humanity should be embraced in all its forms, perfect or otherwise. Human beings have a soul, and the most perfect souls are to be found in the most outwardly imperfect people. Isn't it always the case that we destroy what we are most afraid of? These people show up the imperfections in ourselves and we are afraid of that.

Sorry for the moral rant, but all of this makes me so very sad.

Not a moral rant at all Lil. Beautifully said.

Rhubarb I mean- sorry! Beautifully said anyway.

Blimey Rhubarb, do you have lay-preacher leanings? That was very profound, maybe you could send it in response to the Guardian article. It highlights what a pity it is that mothers don't get to have more say in the way society is run. We really are the only ones that understand what really matters in life.

I'll probably get lambasted for this, told I'm being unsympathetic or something, but I've sent my response in anyway. I do feel for the poor woman, but I also think there is a lot of stereotyping and labelling of special needs children in society. Mothers are made to feel like failures if they do have a child with special needs, and then no-one expects that child to do well at all. In some respects the medical profession are to blame by painting a bleak picture to expectant mothers and putting pressure on them to 'do the decent thing'. Almost as if it is cruel to bring the child into the world!

There is something about children with special needs that is amazing, they make a lasting impression upon you and I feel honoured to have met so many. They are so open and pure. I feel sorry for anyone who has not encountered such a child.

I have not worked since dd was born more because I love being home with her rather than seeing it as a need to be home with you. yes in the first few months it was more because she needed it due to medication etc. But now I am going back to work and dd is off to nursery.

Well Lil it was terrible at times and yes I was dreadfully worried about dd - you know what scared me the most - not having her... I figured I could cope with whatever life through at me but that......and I guess it comes from my mum - just suck it down be strong and get on with it. Yes we did have tears and fears but there were some amazing nurses who helped put it all in perspective. ( mainly aussies - which made me feel right at home!!)

I also had a young mother (whose baby had what they originally suspected dd had ) who told me that everything would be all right and my dd would be fine ( when she was facing even worse times ahead than us ). She was so positive about her dd that I figured how dare i wallow when once surgery was successful and everything sorted dd was home and her heart is now almost as good as new. I regularly count my blessings for dd and her strength.

I don't want to debate with anyone, Rhubarb. I mean, I can hardly wait for Jimjams to reiterate that I am full of "misunderstandings", prejudiced, bearing "that sort of attitude" and view her child(ren) as "less than human". Even better if Thomcat gets to add "pathetic", "ignorant", "irresponsible" and "misinformed" -- all because I said that nobody has the right to impose a severely disabled child on others (to which many argued that Downs didn't necessarily mean "severe" or "disabled", etc., but never mind all that).

So I only dare to reply to your last comment by saying, Is a Mother a failure if she has a Special Needs child, and she doesn't enjoy that child? And doesn't feel privileged to have the child in her life?

I didn't feel a need to sympathise or not with the Guardian writer. I very much appreciated her honest account of mixed, and mixed-up feelings. It was a genuine telling of the soul, whether or not she made the right decision every step of the way. Now I know if I go that route what to expect, and I now have more food for thought about whether I would want to go that route. I know the piece got labeled "unbalanced" -- but I can't see it as unbalanced. She had entirely mixed feelings about whether she'd done the right thing or not. Her story makes for effective arguments both ways.

Ooh Rhubarb, remember you're pregnant, don't let your blood pressure rise...

Lil ducks below office desk to watch ensuing debate

err zebra - you came onto a thread in "special needs"- where several mothers have DS children and described their children as severely disabled and a burden to society. Just slighty the wrong audience don't you think? Keep it on this thread - it's less obscene.

Anyway how come you read the "that sort of attitude" comment? Thought you'd gone.

And yes it is wearing to be around people who see my child as a burden to society.

Jimjams she has a condition called achalasia. If you search on that on these boards, you'll see where I first described her diagnosis and some of her subsequent treatments. I haven't written a lot more about it and, to be honest, I can't be bothered at the moment. Having a bit of a bad week having come up against a jobsworth secretary.

Basically it boils down to her having become physically unable to eat normally after having eaten anything and everything for the first five years of her life. And it being rare, there's very little research and very little experience to go on.

However, I have taken something else positive away from the Baby Show this weekend, having spoken to a mother, two of whose 5 children have a rare kidney condition and whose daughter is the first known person to have survived to her age and produced children (and one of those at home!).

Zebra, you say "nobody has the right to impose a severely disabled child on others". May I ask you what burden you have to carry in particular? I for one do not like to see my taxes go on treating smoking-related diseases, they are a huge burden on the NHS, so maybe we should test all babies for their addictiveness to nicotine and terminate them? An extreme case yes, but it is only the extreme of your argument.

All children are a burden upon society in one form or another. You are only looking at the negative aspects of having a disability and you are failing to see the postive aspects. Take Reg Holdsworth as an example of someone with Downs who has lived their life to the full. Take the disabled atheletes who do our country proud in the olympics. Take Stephen Hawkings whose mind is above all. I have a brother who has severe learning disabilities, you asked about siblings of such children. I can honestly say on behalf of all my family that we are honoured to have such a beautiful brother. He has no hang-ups, no inhibitions. If he spends a weekend with me, he goes away knowing more people than I do! He will never work, never lead an independant life, but do we see him as a burden? Never! These people are only a burden if you want them to be. My brother has changed the way some of my friends view disabilities.

You asked if a mother is a failure if she does not enjoy raising her child. I have left the word disability out of there because it doesn't have to be there. Why ask that question just of disabled children? Why not ask it of all children? Aren't there days when we all feel it a bit too much? When we feel burdened by our own children? Mothers of special needs children are just ordinary mothers, they have no special abilities so why single them out?

You think that everyone on this thread is against you. We may have differing views than you, but no-one is calling you names, you are attributing those names to yourself. You obviously feel strongly about this and I can't help but wonder why. Can I ask you a question? What contact have you had with children who have special needs?

Woah Zebra, I said that people who thought that children born with down's were 'severley disabled' and 'a burden to society' were "pathetic", "ignorant", "irresponsible" and "misinformed", throwing back the words YOU used. Can you not understand that that as a mother of a healthy happy girl who happens to have DS to hear that they are a 'burden' and hear them labelled as 'severely disabled'(!!!), is upsetting, offensive and just downright ignorant??? You came onto a SN thread and sid all this, what did you think maight happen?

Isn't this thread 'In the news' not 'Special Needs'?

Yes, I thought that too but the other one is in Special Needs.

SueW- the comments attributed to us were made in special needs. I'm happy to have a discussion on this here in "in the news" - but I do wonder what response zebra expected on a pro-termination for Down's stance on a SEN thread - where there are several mothers of Down's children. Of course people will get over emotional. Some of us have been told our children shouldn't have been born, some of us have been told they should be put in an institution and forgotten about.

SueW- it's always hard to know what to say without sounding trite. I do feel for people with children with rare conditions because then the understanding support is hard to find. The woman with the kidney condition sounds amazing- I'm impressed by anyone giving birth at home- let alone managing to persuade the establishment when she has a kidney condition. Heartwarming stuff.

Jimjams - yes support is hard to find. In some ways I envy people whose children have a condition that whilst debilitating (can't think of a better word to use but trying to encompass lots that have been mentioned on here from genetic disorders to chromosonal abnormalities to things like eczema and asthma and allergies) are widespread enough that there are whole institutions and charities dedicated to them.

For DD's condition there is none of that. There is one major team of docs who seem to publish research regularl but they are really only re-working results from the same 100 or so patients they have seen in the past 10-15 years, most of whom are adult.

I console myself with the fact that no-one appears to have died recently (i.e. in the last 100 years or so) as a direct result of her condition which is more than can be said of many other more common conditions. And sometimes I have to try hard to remember that her increased risk of oesophageal cancer - 40x the normal rate - is really only a small risk and can perhaps be kept to a minimum through regular screening, like smears for her oesophagus (although a recent study suggested that was uneconomical!).

Sue that must be so hard for you having no support groups to draw from - at least I have had support groups to draw from for information or support.

Is it not possible for you to contact other families who have faced this too ?? It just seems to me some of the best support groups I have witnessed come from parents supporting parents.

While I can (honestly, I think) understand the feelings of those with much-loved children with disabilities when they hear of women terminating because their child has the same disability, I also think that termination for reasons of abnormality/chromosomal problems is not that rare and not everyone who does it is a monster. It will never, ever happen that abortion on social grounds is legal but termination for abnormality (of any kind) isn't. That's not going to happen. I found the description of a late termination absolutely horrific (and feel sure that it will put people off), but I would choose CVS if I got pregnant again so I could have an early termination if the baby had Downs Syndrome (and I would find even this hard and horrible, I'm sure) YOu may think this evil, but I don't. It also, IMO, has nothing to do with wishing other people's children away. A good friend of mine recently had a termination because she didn't want a child - at least not now. I didn't feel in the least offended or that her aborting her baby/foetus was a judgement on my child. I just don't see that one is linked to the other. THere is no reason I could give that won't be seen as offensive to those mothers of children with Downs - except possibly that your child is right for you but might not be right for me. And it would be me that raised that child and would be responsible for him/her for the rest of my life. I know there are no guarantees with babies, but there you are. However, I certainly don't feel that disabled people are in any way a burden on society.

SueW I can see why it must be hard having no support. My cousin, who I mentioned on another thread, died when she was 6 of a rare form of muscular dystrophy, akin to SMA type 1.

She was only the 2nd person in recorded medical history to have what she had and it still had no name. Whilst there was no question that she was terminally ill, my Aunt found it very hard to get support through the 'normal' channels as people had no idea about her illness. In the end my Aunt go the most support from alternative therapies and doctors who were often seen as being on the fringes of the establishment. The medical establishment and society as a general entity tend to get very bogged down with labels and many, I think, find it hard to treat someone with a rare or underfined illness. Those alternative and fringe people I mentioned earlier were much more supportive as it didn't matter whether my cousin's illness was known or unknown, there was just a little girl who needed help.

Hope this makes sense. Its sad you have to look harder to find the support you need, and I hope you get it.

To be fair, if you're reading mumsnet by using the "Find New Messages" thingamabob it's not always obvious which "section" they're in. I've got confused a couple of times on this thread because they share the same title even though they're on different topics. It would be quite trivial to get mixed up when replying.

SueW, I've followed your DDs story here (and there) and get frustrated because I can never think of anything helpful to say.

GeorginaA, I never notice which topic a post is under. These 2 are particularly coonfusing.

I don't actually have a problem with termination per se, but I really do find it despicable when a woman has a late termination near or after the point of viability for a mild disability. You can have definite testing done from week 10 (CVS) to find out if your fetus has a genetic disorder - I really think that people who know they would terminate no matter what should choose to have a CVS, rather than hang about until their fetus is capable of feeling pain, sucking their thumb, recognizing when a different language is spoken etc. Personally, I have a child with DS and am pregnant again. I chose to have CVS this time round, mainly because I was worried about another trisomy (would have terminated for T-18 or T-13, but not for DS). I do think women should have a choice, but it is difficult to quantify. Everyone gets very upset about selection on the grounds of gender - but in some cultures it really is a lot more difficult for females to live life to the full and it can be a burden on the family to produce a dowry etc. So should people be allowed to terminate a fetus for being female? Maybe it's better to allow termination than to risk infantice?
The other thing I find difficult is that there is no compulsory counselling in the UK. Some other European countries will not allow a woman to terminate unless she has had independent, registered counselling about the alternatives. Of course this is not always foolproof, but my goodness, it must be better than hearing the kind of junk this woman was obviously told.

infanticide I mean

I never, not even once, said that fetuses "should" be terminated for anything (including "burden" status). I said that no one has the right to tell a parent that they should be willing to accept a severely disabled child.

I only started posting in the Special Needs thread because I couldn't find this one. Call me stupid if you like. Some of you have managed to hit every other letter of the alphabet...

I said that most of society view Downs individuals as a "burden" on society, given that they don't usually turn into net taxpayers (yes, taxpaying status is what I mean, and strictly only that). I didn't even say that I felt that Downs people are burdens, or that that that is the only right way to look at it, or that that was the most important criteria.

I'll never keep up with this thread because motherhood beckons, anyway.