Ignorant/Infuriating Guardian story

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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.

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oh come on robinw- if someone said there was something about your child that so revolted them that they would have to abort any child of theirs with that feature of course you would be offended!

I have no problem with termination. In fact I don't feel anything either way about an unwanted child being aborted- but I do feel horrified that a termination would be carried out at 23 weeks just because of Down's.

I know plenty of antisocial difficult "normal" adults as well.

I think the majority of parents with special needs kids are well aware of the potential difficulties that siblings may face. This is something that charities etc dealing with the children reaslise as well- and a lot is organised for siblings these days. I know exactly where to send DS2 to ensure that he meets others in the same position (in fact most of his friends already are). he'll have plently of opportunity to moan about his brother.

And how sad that your friend's parents are ashamed of their daughter. Doesn't say much about the society we live in does it.

2under2:

I know one - the DS child being the youngest of 4, one of them a friend of mine. Many changes became necessary because of the birth of the DS child, especially as she got older; for one thing they moved from a small town in Kent, where the older 3 grew up happily and went to school, to a large farmhouse/barn converted into 3 houses shared with aunts, in the Lancashire countryside; so that the DS child, as she grew older, would be less likely to roam and get into trouble. Not that she didn't roam and get into trouble anyway, but they had already been removed from the place where they wanted to be, and it was too late to undo.

The parents are now both over 80, luckily for their DS daughter, who is in her early 40s, so she is still able to live at home - but as I understand it, none of her siblings will want her to live with them (she is a grouchy bag at the best of times) so I do wonder where she will go then and who will look after her?

This friend's experience is partly what decided me that if we had a negative outcome of the amnio I had for our 4th child, we would have a termination. Deciding to have a 4th child was our choice, but imposing a demanding life-changing sibling on the 3 children we already had wasn't part of the deal and wasn't fair.

But isn't having another child always life changing to the siblings? I don't think anyone here is trying to impose views on another, just saying their piece. Noone has said this or that is not allowed to be viewed. Unfortunately this is a very very sensitive subject for many people, and it is impossible not to upset someone, although I am sure that is noone's intention.

Zebra it provides an unbalanced view purely because it is onesided, there was no story involving a family who had a ds child. As it is approaching Ds Awareness week it would have been a good idea . I think I would feel exactly the same if I saw an article in the same vein about cp.

It's very easy to stay uninvolved when you don't have a disabled/ special needs child, because you are a step removed the emotions aren't as raw. We spend all our time trying to make sure our children will grow up to be happy well rounded individuals who will be accepted into society, yet face the knowledge that they may well not be. It's impossible not to feel something when you are looking at your flesh and blood thinking someone out there doesn't think they should be born. And yes people do say such things.

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lou,

If people do say that then it's disgraceful.

But you can't extrapolate from person A deciding not to have a child with DS (or whatever) that they are saying that person B's child with the same condition should not have been born. The decision is personal and in no way reflects on others.

I decided that having a child with DS would be too much for us as a family. That's all. Nothing about anybody else. Those who have children with DS, CP, AS or any other problems, get on with it and enjoy life with them are admirable, but the fact that they do that isn't an implied criticism of the rest of us, is it?

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I have a friend whose son , now in his twenties hads been in and out of prison since he was old enough. He has stolen from and thumped his mother. He is what used to be called a right nasty piece of work.

Another friend ( they live in the same scheme) has a daughter with Downs Syndrome. She is in her late thirties and has a job and lots of friends and everyone who meets her adores her.
Her parents are so proud of her and love her to bits.

Now if a test for "Nasty Piece of work " and downs syndrome had been available when these women were pregnant would you have suggested one , both or none abort? What would you have done?

Noone can predict the future. Noone knows how their kids will turn out, whether "normal" or not. It is a bold step to abort a child you wanted because a medical test showed it to be less than perfect.

Wasn't it Thomcat who has a daughter with Downs syndrome who said she feels sorry for other parents who have to get by with ordinary children? ( I think her daugher is called Lottie)
What a fantastic attitude.

Sorry to hog the board but nobody has explained why they would abort a baby with Downs syndrome apart from somebody saying it would be "too much for this family" which made no sense to me.Too much what?

Could someboby please explain?

well ds1 has been more upset by the arrival of ds2 than ds2 has been by ds1's disbaility. What a mean Mother I must be imposing a normal child onto ds1 who obvioulsy wanted to remain an only. (16 months later they are beginning to get on- but ds1 was actually depressed for about 6 months following ds2's birth).

What saddens me about robinw's comments about the annoying ds adult jumping up and down is that this person doesn't appear to have been given a more appropriate way to behave. I assume he/she wanted something. Many people with DS have communication disorders and therefore the same techniques can be applied. Why not teach him/her PECS. They could then be taught to pass across a "please help" card, or and "I want whatever". If they need to wait they could be given a "wait" card. Away goes the irritating jumping up and down.

Saw this in action at ds1's nursery the other day. 3 children there use PECS. I was talking to the staff when one little boy (not autistic but with learning difficulties) appeared with an "I want biscuit" card. The manager went off and got it whilst talking to me. No interruptions, no screaming, no frustration -just some lovely behaviour. I was quite touched.

I know a guy in Aus who has Aspergers (so has some understanding) and he sets up behaviour programmes for adults and children- he was saying the other day how these programmes can help all sorts of disbilities.

Now this is addressed to those with SEN children - I would only say that on here (ie special needs forums) so please don't jump on me the rest of you. But reading this thread one thing strikes me. Havind DS1 really has taught me what is important in life- thank God for some balance.

sobernow- I think you are right- that's the crux of the matter. I have no problem with someone terminating an unwanted pregnancy (especially early on), but I do have problems with someone terminating a wanted pregnancy for a high functioning disability. (I make that distinction because I could understand why someone would terminate for anancephaly say). Although Lou's story shows there are no definites.

But we're not hetting on with anything. We're not admirable janh- that's the point. If socety didn't have such a negative view of disability then any child would be seen as a joy. As all our children are.

robinw- how dare you say that because I'm sensitive to a newspaper article about someone aborting on grounds of disability that ds2 wouldn't be able to talk to me about difficulties with his brother. What absolute rot and what an assumption.

I was chatting to a friend last night and we were talking about having other children (she is in the same position as me), and we were talking about the impact of autism on our other children. We're not sitting here with our head in the sand weeping every time someone makes a nasty comment. Now I really am cross. I also heard this week from someone who had sent her NT siblings on a course run by a psychologist where autism was discussed and stored that up as "a good idea" for the future. If I had any problems with DS1's disability I wouldn't be so open about it would I? And if other people are embarrased by their disabled offspring, they obvioously care too much about what Mrs Jones down the road thinks- and that is a reflection on the society we live in.

just want to add this timely article which I received this morning, sorry about the weird formatting:

PEOPLE WITH DOWN'S SYNDROME DISRUPT SCREENING CONFERENCE

Woman with Down's syndrome tells doctors: 'I am a person not a disease.'
On May 19th, a group of people with Down s Syndrome and their supporters disrupted the International Down Syndrome Screening Conference at Regents College in London. This is the first time people with Down s Syndrome have made such a protest and is a major new step in the debate about genetics, eugenics and the rights of disabled people. As a result of the protest, the conference organisers allowed Anya Souza to speak from the platform. Ms Souza, who is a trustee of the Down Syndrome Association, told the doctors
that she opposes Down s Syndrome screening and that people with Down s Syndrome are people not medical problems.
The protesters consisted of three people with Down's Syndrome, another disabled person with learning disabilities and their families and
supporters. They had written to the conference organisers in advance and asked to speak, but were refused by the main organiser, Professor Howard Cuckle.
It is unacceptable that doctors discuss better ways of preventing people with Down s Syndrome being born, whilst excluding their voices
from the debate. This runs directly counter to one of the main demands of disabled people: Nothing about us without us. The protesters expect
that their action will persuade the conference organisers to ensure a full debate at next years conference with proper representation of disabled
people with learning difficulties.
In her speech, entitled Everything you ever wanted to know about Down's Syndrome... but never bothered to ask , Anya Souza said:
I can t get rid of my Down s Syndrome. But you can t get rid of my happiness. You can t get rid of the happiness I give others either. Its
doctors like you that want to test pregnant women and stop people like me being born.
Together with my family and friends I have fought to prevent my separation from normal society. I have fought for my rights. &.. I have the
right to a job, to services when necessary, to a decent standard of living, to know about my medical problems, to speak my mind, to make choices about my friends, whether to have sex, and so on.
To do this you have to be independent when you grow up and not get separated from society... I may have Down's Syndrome, but I am a person
first.

Kitty Gilbert, who also has Down's Syndrome, said:... I enjoyed watching the conference although I was a bit scared of what the conference people were saying. I think screening pregnant mothers with Down's Syndrome babies
is wrong. They are wanting their offspring to be able to enjoy their world around them and have endless happiness. I for one gave my mum pride and
joy and I will continue to do so. I think that we should be treated fairly and equally, not being getting rid off because there is so much more in
life that we can do. We are what we are and ask our opinion."

Janh , no I wasn't criticising you at all, why did you think that? I was just adding an opinion on a thread, it certainly wasn't aimed at anyone. Sorry if you thought that.

Robin it is onesided because it only gives one viewpoint, however sad or emotional that is. I agree she did make a very hard decision, and she is the one who has to come to terms with that, but she should have thought more about her wording before this was sent to print. It will be offensive to many many people.

2under2- what a great piece. Have you read the same thread under "in the news" - it's interesting becuase the discussion there is slightly different.

I've said again and again that people with disabilities are treated as being less than human.

Lou- did someone say that to you? My friend with was queuing in the post office when pregnant with her second child. She had her son with DS with her. A vile old woman came up to her - pointed at her son and said "children like that should never be born".

Now let me see who would I prefer to spend an afternoon with? Vile, disgusting, warped old lady, or little boy who happens to have Down's. Hmmmmmm.

This thread and the other Down's one have been running through my mind all night and day, there are so many aspects to it. In the course of it, I recalled an acquaintance who already has a Downs child. When she was expecting again she was adamant she didn't want another Downs child and had an amnio with a view to terminating if it showed up. Her experience with Downs has not been positive, like the examples here, even though she is pretty switched on, and she felt she simply couldn't cope with more of the same. As it was, the new baby didn't have Downs, but do you think her decision to terminate would be more valid because she had already BTDT? I know some of you have said previously that you wouldn't have tests in another pregnancy, so I'd be interested in your views.

suedonim- good point. I'm thinking about going for number 3. One thing that puts me off though is that I think I would find another disability (and type) quite hard. Not the disability itself, but having to fight for services again with another child. I don't have the energy to do that really.

However because I feel like that and I know I really couldn't terminate the question becomes more- do I take the risk and become pregnant agin (because I am then committed) or do I stop with DS1 and DS2, or adopt I guess. I guess I kind of think if it worries me that much I shouldn't get pregnant. I can understand where your friend is coming from, and I know that's oversimplistic, but that's how I feel.

lou, no, I wasn't taking it as criticism, sorry if you thought that - goodness it is so difficult to put across what you want to say in writing, without facial expression and intonation to show exactly what you mean! I only wanted to say that A's decision not to do B should not be looked on as disapproval of C's decision to do B.

And jimjams, you might not want to be considered admirable but I do admire you. Sorry! I'm quite sure that in your situation I would not be nearly as cheerful and philosophical as you.

fallala, it was me who said I felt it would be too much for our family - partly for the reasons given in my post addressed to 2under2, the experience of my friend with the DS sister who is the youngest of 4 and certainly changed their lives, they feel, not for the better.

I think having a first child with problems (I'm sorry if that's the wrong word but I don't know how else to put it) would be easier to adjust to, and for subsequent children to fit in with (never having known life any other way) than the other way round.

some people have expressed surprise when we talk about no2... and I challenged a friend who could not believe we would think about having more children after dd ( down's syndrome and heart defect). She could not bring her self to say - what is we had another child like dd... my response was and ?!?! To us - firstly our risk is about the same as having twins.... and that will not stop us having another child.

We are planning at least another child for our family - we have no intention of dd being an only child. And I will have as little intervention in terms of testing as I had last time.

jimjams personally I too think the disability issue is a real concern when planning another child. I was pregnant with ds when dd was diagnosed with global development delay and all the tests started and I was so frightened that if it was a genetic problem or whatever that ds would have it too. I do feel like it is hard enough having one child who is disabled but I suppose if you have another disabled child you just cope dont you.

In reply to alot of these comments I love my dd and dont feel she is any different anyway. dd has a learning disability very similar I suppose to DS and this would not have been picked up on an amino anyway.

I do not label Downs a "severe" disability from a position of ignorance. I know one Downs man well, and have met plenty of others -- including a lovely 12yo girl who could ski and read. but she was very "high" Downs.

The article had to be unbalanced in the sense that you all describe; to put in positive Downs syndrome accounts in the same story would have been highly insensitive; almost gross.

The Downs man I know well is about 19yo, and my cousin ( "M." ). I'm fond of M., and I don't wish him away, but I would have fully supported his mother if she had chosen to terminate him as a fetus. He is considered "high" Downs intellectually, but low Downs physically, which suggests that his ability to become a "functional" and independent member of society is probably about average for Downs people. He cannot read, or (properly) wipe his own bottom after going to the Lav. His mother & older sister do much of his physical care, including cleaning, bathing & cooking. Like most Downs adults I've met, he is extremely shy, to the point it is difficult to engage him in conversation. He had to have major surgery around 10-12 yrs old twice, because it failed the first time on skull bones that failed to fuse together naturally (related to his chromosone defects). The family went out rarely for years because of the awkward (and to M., embarrassing) contraption he had to wear on his head. He is mostly wheel-chair bound, as he struggles to walk more than 100 yards due to poor muscle tone & weak knee joints. He has no heart defects, unlike 30-40% of Downs people. He has had a weight problem, but probably lacks thyroid disease (unlike 30% of Downs people). He lacks many social skills, although a proper "training" course could fix that. His mother is deeply worried that like most Downs people, he will develop an Alzeimher's type condition before age 40. Although his mother has blossomed a lot with the duty of care for him, some of the rest of the family have been adversely affected. His aunt, who knows & loves M. dearly, tells me she almost certainly would have terminated if she found herself with a Downs baby. M. seems quite similar to the young Downs syndrome man who lives across the road, who is about age 30. His parents are elderly, and I worry about their son's care when they become too frail. Luckily, M.'s mother is still quite young.

A friend has a baby with a rare chromosone defect. The child has problems similar to Downs. Lovely girl & I often think 'Could I "terminate" her?' But when I see how stressed out her mother is with her condition & problems that come up, the choice seems easier.

I would prefer to not have a baby for life; having Downs syndrome is a lot like being a baby for life. That to me is severe disability. I won't argue the rest of the points because I can see they are well-covered in "the other thread".

Just to let you know - I emailed DSA and apparently a few people have already emailed them expressing their upset at the article.

The most difficult thing about having DD is having to fight the ignorance and prejudice of others and deal with government/social services.

Yes there have been difficult times - three weeks in special care and then two open heart surgeries at 2 months old along with the complications.... not as many as 2under2's little one had but some similar. Dealing with medical staff at a top London hospital known for prejudicial behaviour towards people with down's syndrome under their care!! ( that is slowly improving)

She needs no ongoing medical care in terms of her heart defect - in fact it is like a 'normal heart' to quote the cardiologist.

The easiest thing - spending day after day with her... her joy and wonder at the world and seeing the pleasure and joy she brings to others.