Tuesday, October 27, 2009

Reasons to abort

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In the news today is a report about how there has been a 70% increase in pregnancies carrying babies with Down's Syndrome (or Down Syndrome - without the 's' - as it's called elsewhere in the world), due to more women having children later in life. But because of the increase in screening, and subsequent abortions, the number of children born with DS has in fact fallen.
This is because improved antenatal screening means more Down's pregnancies are being spotted and more abortions are taking place. Without the improved screening, the number of babies born with Down's would have risen by 48%, according to the study. (BBC News, Tuesday, 27 October 2009)
It goes on to say that the number of couples chosing to abort pregnancies these has remained consistant at 92%

I might not be alone in finding this statistic horrifying, grotesque and heartbreaking, but clearly as part of a couple who fall into the remaining 8%, I am in a serious minority.

Now I am, in fact, Pro-Choice. This does not mean I feel abortion should be a causal, unthoughtout affair, only that I believe it to be wrong that a woman should be compelled by church or state for her body to go through a such a body and life changing process regardless of her own feelings on the matter.

However, a real choice requires access to up to date, unbiased and complete information on both sides, and this is seriously lacking in the medical world. There is an image of people with Down's Syndrome as "other" as "less than" as "not fully human" - someone who looks a bit funny, is mentally and physically useless, dribbles into their chest and probably has a dodgy pudding-basin haircut.

This image was created largely by the government and medical authorities whipping away babies with DS from their mothers and putting them into institutions where they were never given the proper love or stimulation to grow and develop as full individuals. And were given haircuts of convenience.

This image is hopelessly outdated, and yet remains entrenched for many people. And as more pregnancies carrying children with DS are terminated, fewer will be seen and the sense of "other" will only increase.

Rule number one of any conflict - dehumanise the enemy as it makes it easier to inflict harm or kill them.

And so long as people with DS are considered as “other” it will be easier to terminate or prevent their existence in the world.

Of course as a father of a beautiful daughter who happens to have DS, I am continually amazed at what all the fuss is about. Yes, sometimes there are some difficulties. But then show me any child where there are no problems and everything is perfect all the time.

I’ve always maintained that 98% of bringing up a child with DS is the same as bringing up any child. Any difficulties and differences can be worked with and overcome. They are certainly not reasons sufficient in my mind to destroy the life potential before birth.

And if you want to see conclusive proof of how children with DS are anything but other, then do visit the photography blog of Conny Wenk, who takes the most beautiful photos of families, including many children who have DS.

Over on my sidebar, under the "Dash of something extra" category, you will find links to several sites where parents are blogging about their children who have DS. Mostly what you find is it's just parents blogging about their children and the DS is quite a minor issue.

And if you would like to involve yourself and see first hand that raising or helping a child with DS is remarkably similar to raising one without, do visit Tara Marie's blog about her daughter, Emma Sage, who is looking to get postcards from every US State and is happy to accept ones from countries around the world too. My one from Scotland is already in the post.

Finally, about 2 ½ years ago I wrote a very short story, which I intended to publish on this blog, but my wife thought it was a bit too in-your-face. However, in light of the feelings stirred up by the news today, I’ve decided to dig it out and put it up – see below
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63 comments:

Melanie said...

Very moving. I have a niece with special needs (not Down's). I love her and cannot imagine life without her. My Mother devoted her life to kids like my niece and your daughter, so through my Mom's profession, I was given a gift to know these kids for who they are: Kids!

Rachel said...

I don't think your story is too in your face. I too was shocked by the statistics today on the news. It didn't even cross our minds when we were pregnant to get screened for anything above the 2 scans offered on the NHS.

St Jude said...

I am also pro choice and I agree wholeheartedly that people need to be better informed. We all have something of the 'other' about us in some small way. I was profoundly deaf for a number of years, signing certainly draws attention. I merely 'spoke' a different language. I liked my silent world, but eventually I felt compelled by the reactions of society to me to have surgery. It hasn't changed who I am.

liZZie said...

I had a cousin with Down's who I loved a lot. In those days, 1950's & 60's there was ignorance and fear still. Painful to reflect upon. When I was carrying my second child, at about six months I was told she had spina bifida. My then husband told me he would leave if I didn't have a termination. One has to be very careful what one thinks and says about such things.

V said...

Did you hear today's Radio programme The Choice? It's an interview with a single woman who has adopted a number of children with DS. It maybe of interest;

http://www.bbc.co.uk/iplayer/episode/b00nf1bv/The_Choice_27_10_2009/

Your thoughtful relflections are good to read,

V

http://learningtobeselfish.blogspot.com/

ADRIAN said...

I also followed the radio programme. Agree with most of what you say, one problem that I haven't seen addressed. DS afflicted people now live much longer than they once did. What happens when you are no longer able to cope? Or can they, with help, become self sufficient? This wasn't touched upon on radio4
I'm pro choice but fortunately it will never be my choice, thank god.

Suz said...

I am pro-baby. I can see both sides of the issue but to have an abortion because the child might inconvenience you is unforgivable.

Every child is an inconvenience at some point. People are so self-absorbed these days.

Thank you for your story.

Rachel Fox said...

People get very obsessed with having 'perfect' children (and 'perfect' lives). It's a bit of a sickness really. Both pieces on here are very interesting and heartfelt. It is something I know a little about but it is always good to hear more informed opinions on important subjects like this.
x

Pat said...

My step- grandson has just had Sophie who has Down's syndrome. They already have a small daughter and last year they lost a baby in utero so we are very thankful that Sophie is now out of hospital and getting stronger. I'm really looking forward to meeting her and know she will bring a lot of love to our family.

Jacqui said...

A very powerful post. One that make you think 'what would I do?

Khanh Ha said...

When you're a compassionate human being, a DS child is but another human being like you, begging you in their unspoken words to be loved and sheltered from rejection. Painful to accept to many others. But your compassion can change things around you. And it starts with your own family.

Enjoyable piece of narrative, Kim.

ArleneWKW said...

I don't know if you are familiar with the American columnist, George Will. He has a son with Down's Syndrome and wrote a beautiful editorial that appeared in Newsweek many years ago. Thanks to your post, I did a little digging and found it on-line.

www.bloggernews.net/115275

Helen said...

Hey Bearded One - voices like yours can help change opinions and statistics. Keep talking...LOUD.

Kate said...

As a support worker for adults with learning difficulties I was horrified to hear about this this morning on the news so it was heartwarming to come to my dashboard and see you had written about it. Particularly when you write so candidly and honestly.

All I can say on the matter without becoming extremely passionate (and I do not feel your blog is the place to voice my views too strongly, even if you have invited discussion) is that every single day I realise that people really do still have a huge problem understanding that people with learning difficulties are in fact that same as all of us - unique. I work with people with varying levels of care, the biggest indication possible that NOTHING can be assumed because of a word that is affixed in the interest of generalisation.
Everyone has their own needs and sadly the main reason for a profession like mine is because some people can be taken advantage of more easily and therefore need someone to stand up for them.
Thankyou for speaking honestly once again!!!

amy flege said...

i sooo love being the minority!!!!!

hope said...

Well said, my friend.

The best hug I ever received was when I was a kid and a little boy with DS stopped to see what Mom and I were building on the beach. He then hugged Mom and me before happily going on his way.

I remember it because...it was the most honest and love filled human connection I ever felt.

Single Dad / Disabled Daughter said...

I've been reading your blog for a while and appreciate what you write very much. It is scary how I blogged today about "The Other" concerning my severely disabled daughter, mirroring your thoughts in many ways.
Great post, keep it up.

mapstew said...

What bothers me most is where does it stop, and what and who decides the parameters for a 'normal' child!

I've been in the entertainment lark for quite a long time now and my favourite, and most memorable gigs have been the after-games parties we did for athletes with DS! Wonderful, happy, full of joy events!

A very thought provoking post my friend.

Ron Tipton said...

Thank you for posting a blog on the subject of a special needs child. One of my niece's sons is autistic. She has seven children. He could not be more loved than he is now. The thought that another mother would have aborted him before he was even born is inconceivable now that we know Kyle. He is a light unto this world.

While I am pro-choice, I do not think abortion should be one of convenience. Education such as blog postings like the one you just wrote will help to reduce the stigma of the child who is born "not perfect."

I've often thought because I am gay, would I have been permitted to be born if my gay gene was discovered before my birth. Sad to say, probably not.

I whole heartedly believe that we are all put on this earth for a reason. I also know that all of us are imperfect in some way. But I also believe that those of us who are more imperfect than others are here to test our humanity.

I recommended your blog to a friend of mine. He read your blog and then dismissed you as "Oh, he's an atheist." My friend if very pro-life (after losing seven children he and his wife finally had three healthy babies.) He contributes the birth of his children to God's intervention. That is the same situation with my brother. He turned his life over to God after much wanted son (after two girls) was born and died a short time later. He was warned that if his wife got pregnant again she might die. She almost did. He took the fact that she lived but his new born son died as a sign from God. A sign to be obedient to God.

In a way I'm fortunate I am gay and I don't have children. I don't have to face such heart wrenching dilemmas.

Stark said...

I would find it difficult to blame those who choose to abort fetuses that will present with Down syndrome. I find it hard to believe that it is as simple as convenience. I have worked with Down syndrome kids before, and they are the most loving and wonderful children. It's like they never grow out of the phase where the world is beautiful. It's not the terrible thing it's made out to be.

But it's horrible to a parent who cannot deal with it. A single mother trying to take care of a teenager has problems enough, but a single mother trying to take care of a teenager who never stopped being three? In America it would be next to impossible. She would have to work. She would have to have health insurance. She would have to have so many things that many single moms don't have (rampant generalization don't attack me please). It would be unfair to bring a child up in an environment where they are an incessant burden.

In a pessimistic, unhappy, probably completely unfair nutshell: it's better to abort them than to abuse them. Some people are good and kind. Many are terrible and cruel.

debra said...

I am pro-choice as well, Kim. Government has no business controlling my body, in my opinion.
When I was pregnant with my girls, we opted not to have any of the available diagnostics. We knew that there were no conditions on our love.
On another note (pun intended), Emma Sage will be getting a postcard from Ohio.

Jasmine said...

I agree with everything you've said. I have a co-worker who once said to me that if she ever had a child diagnosed with Down's Syndrome that she would put it up for adoption because she doesn't think she could handle the responsibilities. And I was just in a total wtf shock. For one, I was offended because I have a younger sister with Autism and it just makes me mad when people say that about any child with special needs. Why would you love your child any less? A child with Down's Syndrome or Autism (or whatever) is STILL YOUR CHILD. There are parents in the world who have children who are drug dealers and murderers, and they still love their children. And then we have parents who want to give up their child who isn't even born yet (or just born) because they have a "problem."
I guess you have to get to know your child to love them.
I agree on the pro-choice issue as well. Not that I am for abortion, or think I could ever really go through with one, but it is a person's choice to choose. And if you take their choice away, it won't stop them from trying to abort and then that just causes bigger issues. Better to be safe than sorry.
And on top of screening for disabilities, parents can DESIGN their perfect child. Little lab babies. (http://www.time.com/time/magazine/article/0,9171,989987,00.html)

I don't think what you wrote was too in-your-face. It's honest.
I'm going to leave at that note. I could take a few hours writing. :)
I hope you have a wonderful day Kim. I'm glad you posted these entries.

Jasmine said...

Another point I meant to mention was that a child with special needs is by any means no more difficult to raise than a "regular" child.

That goes back with the point about my co-worker. But I think faster then I type. Sorry for typing so much. Just my two cents.

Miss Blue Sky said...

Hi Kim
I totally agree with you on every point and I'm sure anyone who's met Meg will too. I get so angry when I hear about other mums who abort their babies because they're not 'perfect'. The thought of doing that makes my flesh crawl. Anyway, Meg is perfect! :)

Helen's Angel said...

Great post Kim, and so true about the haircuts! You can make any child look ridiculous.

I think what people find hard is that there are degrees of all sorts of "special needs" conditions - Down's and autism spectrum disorder (ASD) being cases in point. The more severely affected will certainly be tougher on your mental and emotional resources than those at the lesser end of the scale.

When my friend was pregnant and we discussed diagnostics she said, "But Helen you HAVE to have all the tests!" and then told me what her obstetrician had told her about the "terrible health problems" of Down's children and spina bifida children. On the one hand the doctor was scare-mongering. On the other she was presenting the worst case scenario so my friend had information with which to make a decision. Expect the worst affected and hope for the best perhaps? Either way, I don't like scare tactics from medics.

From what I know, very many people with Downs and ASD lead either independent or almost independent lives. And plenty of people without extra conditions to cope with are a financial and emotional drain on their parents - the drug addict, the terribly depressed, the incompetent with money, the alcoholic, the Peter Pan.

There is no "perfect" and to expect the perfect is to set ourselves up for a lifetime of disappointment.

Technogran said...

Your right! I will never ever be sorry that I had my Down's Syndrome daughter, she has attributes that a so called 'normal' daughter would lack, caring in nature, generous, funny, loving, and I wouldn't be without her for the world. She figures often in my blogs and is a popular member of our community where we live.

Kim Ayres said...

Melanie - first and foremost, children are children, whatever else might be in the mix. It's why parents get upset when people talk about a DS child, rather than a child with DS - it's all to do with where the emphasis is placed

Rachel - well its only if the standard blood test comes back with something, that we are then faced with decision making. We went through a false alarm with our son, which meant that by the time Maggie was pregnant with our daughter we knew the tests were irrelevant so refused them

St Jude - I am constantly surprised by the new information I keep finding out about you :)

LiZZie - so sorry to hear of you ordeal

V - one of my stepdaughters was telling us about it. Thanks for the link, I'll go and have a listen :)

Adrian - we are bringing Meg up to be as independent and self sufficient as we can - as we do with all our children. We fully expect her to leave home when she is an adult and set up home independently or within a supported housing system. I don't think there needs to be an assumption that the parents are somehow "burdened for life". But then, if you had a child who was perfectly healthy but then as a teenager suffered an accident which left them paralysed, the same questions you ask arise then. We do, as parents, what we need to do.

Suz - one of the best comments I've heard is posted on the other blog post, which says if there was a test to show us how hard raising teenagers would be, no one would have kids :)

Rachel Fox - the idea of perfect children is so contradictory, as any parent knows. On the one hand, all children are perfect, and on the other, all children can be an absolute pain in the arse at times.

Pat - Many parents I know who have a child with DS say that in the early days, people didn't know what to say, so either offered condolences, were patronising or avoided them. What few people said was "Congratulations on the birth of your child". So please pass on my congratulations to your step-grandson and his partner :)

Jacqui - if anything I write makes someone pause and think, then I consider it a great success :) Unless they jsut think what I've written sucks...

Khanh Ha - thank you :)

Arlene - thanks for the link :)

Helen - To be honest, I don't know that anything I say really makes any difference to anyone's opinion. Mostly we have already made up our minds and whether we agree or not with something we read it is more likely to further entrench us in our position. I'd be very surprised if someone said they'd changed their opinion from anything I'd said

Kate - this is one of the main things - everyone has special needs of one kind or another

Kim Ayres said...

Amy - sometimes it's a bit like being in a room of cakes and discovering you're the only one who likes the chocolate one...

Hope - sounds like a lovely experience )

SD/DD - thank you for de-lurking - I'll pop across soon and take a look at your post :)

Mapstew - part of the problem is, the moment a test can be developed, it will be used to create selective outcomes. In cultures where a male child is seen as more important than a female, then sex tests are widely used in order to terminate unwanted female foetuses. So long as cultural expectations create a desire for one kind of person over another, selective pressure will be there.

Ron - if there were pre-natal test to determine the outcome of someone's relgious beliefs, you can be sure many terminations would follow.

Stark - Part of the problem with any debate to do with pro-choice/pro-life is that both sides have a tendency to put up extreme circumstances for the oppostion, making it easier to shoot down their arguments. Now whether or not I would agree with your position, the fact is the 92% who abort a child with DS are not all single parents struggling with huge social and financial pressures. Pregnancies carry a foetus with DS happen across the spectrum regardless of race, religion or social backgrounds. So most of what you say applies to non-DS pregnancies. Therefore, should people who are struggling financially and socially also, automatically abort any pregnancy? And what about those who would not be financially or socially impeded by having a child with DS?

There are many aspects going on in all decisions. But when the general abortion rate is 22%, but where DS is concerned, it rises to 92%, then misinformation and fear are likely to be playing a much higher part.

Debra - not all pro-choice people use abortion as a regular alternative to condoms, and not all pro-lifers would discard the life of a mother just to save the baby. I would say I was pro-choice in my beliefs and pro-life in my actions, if that makes sense.

Jasmine - have you seen the film GATTACA? Well worth a watch :)

Layla - and if someone could predict and say your daughter will have a stroke at 16? How many people would hesitate? Yes, it is fearful, which is why I had to write that story.

Helen - worst case scenario tactics are so pointless - we can just as easily apply them to "ordinary" children. Worst case scenario? Yes, your child might turn out to be a serial rapist, or die in a terrible accident aged 7, or be the cause of world war 3, or believe everything Fox News tells them...

Technogran - at least she's never likely to become a crack dealer or politician :)

Technogran said...

Her philosophy as follows: On boyfriends.'I have more sense Mum than to get married.'
On children 'I don't want any because I am too soft'
When she sees all of her relations who are younger than her,not married but have children
'I have more sense,Mum'
On others getting drunk,taking drugs,smoking etc,
'I have more sense Mum.'
And of course despite the fact that society tends to think that our special needs offspring cost more etc etc, do they really? When you consider what a so called 'ordinary child' might end up doing?
As you have said, no one is ordinary, everyone is different and as my daughter would say
'I am what I am.'

Patrick said...

Great post. Well said. If only everyone thinks like you, alas, that's not to be for now..

Single Dad / Disabled Daughter said...

I have two severely disabled children. If we discovered that we were about to have a third, also severely disabled, then what? I do not believe anyone would find fault with the option of "opting out" from that. Then comes the definition of "severely" ... is it based on what the family can handle? Personally, now single with my daughter, I'd gladly welcome an additional, DS or not. But that's me.

Pat said...

Thanks Kim - I will. Knowing you and your lovely family has been an enormous help.

erika said...

When I was pregnant with Izabella the thought of a having a baby with DS was frightening. Izzy's AS diagnosis and being faced with the challenges of raising a child who is severely disabled, non-verbal and have impaired motor skills, put DS in a different light. They can talk, walk, be part of a mainstream class, they can live independently or in a group home setting ... things that I can only dream about for my daughter. So DS doesn't sound so bad from where I'm standing. Far be it from me to minimize the challenges that parents of children with DS face, but for ME terminating a pregnancy due to DS is not an obvious choice.

I remember sitting in my dermatologist's office in Budapest a couple years ago, and getting into a conversation with a fellow patient, who happened to be a young man with DS. He was polite, well-mannered, using formal language with me, he had a great sense of humor, and he was just simply delightful. Granted, he probably would have scored lower on a standardized IQ test as a person with "average" intelligence, but who cares, and it was way more fun to hang out with him than some of my then fellow graduate students. The thought that he would have been "terminated" before he had a chance to bloom into the delightful young man who he was frightened me. And looking at his mother face glowing with pride, I doubt he was a burden. Sorry for the long post, I should blab on my own blog :) Thank you for the excellent post, Kim. And I loved your short story, I'm so glad you decided to share, even against spousal advice :)

Kim Ayres said...

Technogran - sounds like you have a daughter full of sense :)

Patrick - while I think I make perfect sense, it's clear on a number of fronts I'm in a minority

SD/DD - so you're a weirdo too? ;)

Pat - if there's anything I can do, or if they want to talk to anyone who's been through it, you have my email address

Erika - thank you for your longer comment - it greatly enriches this post and is wonderful to read :)

It's all about perspective, isn't it? Within 48 hours of Meg being born, it was clear she wasn't feeding properly. In fact she seemed to barely wake and it looked like her system was shutting down to die. For 2 weeks Maggie was in hospital with her while Meg was fed via a tube through the nose. Then at 5 months old she had to have open-heart surgery.

On both these occasions we had to face the very real possibility our daughter might die. At that point, the DS seemed a very, very minor thing by comparisson.

Charlie said...

Martha and I still miss her DS sister, Mary, who died in 2003 at the age of 57--unheard of back in the 50s when 27 was old for my cousin, who was institutionalized.

After looking at a few pages of Connie Wenk's photos, the 92% is even more horrific. If only some of that 92% could (or would) look at those photos first . . .

Jasmine said...

I haven't seen that film Kim. I'll look into it.

Sami said...

Sometimes those things we think up for ourselves to get us out of a problem only dig us into a deeper hole; every culture has things it would rather not experience in its children, and the easiest thing is to make those children go away before we can hold them. Thank you for your post, Kim.

Kim Ayres said...

Charlie - I think Conny is one of the most powerful advocates I've ever come across

Jasmine - It stars Ethan Hawk and Jude Law, so it shouldn't be too hard on the eye for you :)

Kim Ayres said...

Sami - it's a good point - it varies from culture to culture what is valued and what is not. And as some cultures become more dominant, so the fall-out of the negative aspects become more widespread

Falak said...

Wish there were more voices like your's to drill sense into people..... I totally agree with you that what is valued varies from culture to culture. In India most abortions take place because the potential baby is going to be a girl. And if they decide to have the baby and she turns out to be dark the poor child is in store for hell:( I had written a post regarding this quite some time ago on my blog.http://muchadoabouteverything-falak.blogspot.com/2009/10/sisterhood-of-strawberries-and.html

Thrup'ny bits said...

One aspect of the statistics (lies, damned lies and statistics) you didn't mention is that many couples are choosing to have children later in life when chances of things being not quite as expected are higher.
The matter of abortion I find hard to deal with as my first wife discovered she was pregnant when she was in hospital for treatment of previously diagnosed cervical cancer. What to do? . . .
But that in no way excuses the appalling percentage of abortions performed for apparently selfish reasons.
My only cousin had Down's but didn't survive.
I worked for the last ten years with adults who needed much support. There are just so many different conditions, . . . here's where I trail off, too many memories and thoughts to organize into a concise comment, sorry Serendipity at work here. I just received this in an email:The saddest aspect of life right now is that science gathers knowledge faster than society gathers wisdom. -Isaac Asimov, scientist and writer (1920-1992)

Coralee said...

your experiences, writing talent and commitment to your values continually touch me. . .thanks for sharing

Sayre said...

What a terrible thing this is - this abortion due to DS. I think I told you... I'm a late in life mother, and I did have the test for Down's Syndrom - not because I wanted to terminate if it came back positive, but because I wanted to be prepared for the possibility of some complications. My son does not have DS, but I would not have loved him any less if he did.

And your Meg is probably one of the most beautiful children I have ever seen. I sure she's just as proud to have you for a dad as you are to have her for a daughter.

emma said...

You already have lots of comments so I was unsure of leaving another(but here I am anyway).

I am suprised at the new findings as it was this time last year that the BBC had another article saying the number of DS births was increasing due to a change in perception of DS,
http://news.bbc.co.uk/2/hi/health/7741411.stm
so this new article is quite depressing.

I won't repeat what Erika wrote, but I feel the same way - and that I would have been frightened of raising a child with a disability has so much(all) to do with how disability is still perceived so negatively, it creates a completely false idea of what life is like raising a disabled child (or living with a disability). This is of course hugely influenced by the media and by those in the medical profession.

However, I've found when I talk positively about my son, and how I like my life as it is, I have the impression that people think I'm "overcompensating" - as though "the lady doth protest too much"??

I haven't worked out how to create a balance of explaining the difficulties of raising a child with a disability, in order to advocate for desperately needed changes in society, with talking about how life is just as good as anybody elses (it's all about perception anyway), and it is not the desperate nightmare that some people believe it to be.

At this point people are still basing the descision of whether to abort a child or not on out of date information.

Gattaca - like this movie, genes aren't everything.

Technogran said...

I totally agree with emma. Besides my Down's Syndrome daughter I have two sons (who do not have special needs) and in many ways its been easier to bring her up than it has the two boys! Its been harder work, certainly in the first few years of her life, but at the same time, so rewarding especially the day that she donned her high school uniform and took her rightful place in our local comprehensive school where she would have gone if she hadn't such needs. In many ways, she has caused me far less agrivation and heartache than my son's have.
She is also far more 'well rounded' as an individual as well. (and has far more common sense than the other two put together in my view!)
This is a really good discussion about a very immotive subject

Kim Ayres said...

Falak - I remember reading that post of yours - it's very moving

Alan - of course statistics don't tell the whole truth, and can be maniputalted to say anything. Sometimes though, they can act as guidelines or warning signals. There are many and varied tragic reasons for terminating a pregnancy, but when you get to a level of 92%, the biggest tragedy has to be in the perception of what people think they are going to end up with.

Coralee - thank you for your warm words

Sayre - sometimes she's proud of me, and sometimes she thinks I'm a complete pain...

Emma - now you point it out, that article from last year looks familiar - it's amazing how they can take almost the same information yet create 2 entirely different stories out of it.

I know what you mean about the problem of talking about your child - on the one hand there is a need to stress the positive, to try and overcome the negative assumptions in people. And yet, it can sound too much like over compensating. I think this is why, in the end I find myself saying 98% of raising Meg is like raising any child, and for the most part it only becomes an issue when someone else makes it so.

Technogran - I can sympathise there. Having brought up 4 other, non-DS children, Meg has by no means been the most difficult :)

Entrepreneur Chick said...

Rule number one of any conflict - dehumanise the enemy as it makes it easier to inflict harm or kill them.

Boy, have you got that right.

Mulled Vine said...

I think this is a slippery slope. Where do we stop? Designer children?

Perhaps we should terminate normal people when they become abnormal, e.g. through mental illness.

I don't know if I am pro choice or pro life, but I certainly pro facing up to your responsibilities. Some of my greatest joys have been wrought through suffering, so the equation is not that simple.

Falak said...

I did'nt know that! Thank you though:)

Alice said...

Have you ever read the fiction book The Memory Keeper's Daughter? A doctor long ago, delivers his wife's twins during a blizzard. He sees the daughter has DS and asks the nurse to take her away to the institution the next day and tells the wife the daughter was still born. But the nurse take the baby and moves away, raising it as her own. Doesn't sound very uplifting and a lot of it isn't, but a lot of it is about this nurse forcing the community she moves to to accept her daughter and other DS kids. Very moving, I thought.

Just thought I'd share, and yes the statistics are frightening and that is also why I refused the screenings when I was pregnant. I don't know how you have the strength to do it, but I have to imagine it just comes to you at some point when you see your child for the first time.

Jonquil said...

You do realize that some people abort because they are worried about the child's welfare, right? It's not that they're scared of being "burdened" like it sounds like the woman in that story is.

That being said, I do not understand people that go ahead with a pregnancy KNOWING they're more at risk for having a Down Syndrome baby due to age and then choose to abort because they find out their baby will have Down Syndrome. Shouldn't that be a possibility you accept when you decide to go through with a pregnancy later on in life so you don't end up doing an unnecessary abortion? If you're that old and you're not prepared to have a baby with Down Syndrome, try getting an already born, healthy child that needs a home like yours!

Kim Ayres said...

Jonquil - I'm not sure I completely follow - how can terminating a potential child be a solution to being concerned about their care?

Whatever may be used as an excuse, to extinguish the life of an unborn child is not about the quality of life of that child, it is about the decision of the parent(s) and how much they are prepared to ensure that the child gets the full amount of care it needs.

I am not necessarily saying that a parent who aborts is always wrong - I am pro-choice - but we do need to be clear about who makes the decision and why that decision is being made. And an abortion is a decision made by and for the benefit of the parent(s), not the child.

Jonquil said...
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Jonquil said...
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Jonquil said...

I'm not really following you either. To me, as a parent, part of my responsibility to my child is to ensure a quality of life to that child. It's not just about caring for a child. It's also about ensuring that child is equipped with the tools they need to thrive once they leave the nest. If they are unable to leave the nest though, which, despite the glowing reports, DOES happen with Downs Syndrome children, that parent has a tremendous amount of work to do in order to ensure that they are ok should that parent depart, and it's easy to see why that would seem or even be impossible for some parents. You not only have to provide for that child for the rest of your life, you have to ensure they're provided for after you're gone and if you leave before you are ready to as well.

I'm a parent. I have an 18 month old son that is completely healthy, and I am crazy about him. He is my world. If I found out he had Down Syndrome though, I can't say that it wouldn't absolutely make my heart break for him. I'm sure you went through the same kind of feelings when you first found out YOUR child had Down Syndrome. I've read the stories of parents who went from being horrified to find out their child was Autistic to being glad to have that child in their lives. It's natural. But some of these parents that have children with Down Syndrome and have gotten past the horrified part to the euphoric part need to really back up sometimes and realize that there are some people going through the same emotions they once did, and those people may not handle it the same way they did. People have different thresholds for what they can and cannot handle the idea of, and it's unfair to those that worry about the child's life after they are gone to act like they're just being shallow and selfish by doing so.

Kim Ayres said...

Jonquil - I think you'll find most people who have been through the process of finding out their child isn't going to turn out how they previously expected, remember only too well how they felt beforehand, and the transition they had to make.

The point is, from the other side of the transition, we see those who haven't been there making decisions on the future of their child based on assumptions which we feel are wrong, or inadequate, and it makes most of us very sad, and it makes some angry too.

If your beautiful and healthy child had an accident, say, at the age of 5, which meant they might now need lifelong care and support, would you put your child up for adoption and say you can't handle that amount of pressure?

Probably not.

If you went through that experience and then learned that life did not end because of the accident, and you still love your child with all your heart, how would you feel if other people said your child was now a drain on resources and if they were in your situation they would terminate them, or at least put them up for adoption?

Quite horrified, I would guess.

I use this idea as an analogy to give you a path through to the thoughts of many parents of children with DS (or Autism or other conditions), and why they get upset by the attitudes and actions expressed by those who feel we were irresponsible for not terminating our children.

It's not that we don't understand the fears of the parents-to-be, it's just having gone through the process we have a different idea about how justified (or not) those fears are.

Jonquil said...

I understand that you don't want to see others make the same mistakes you do. I was just pointing out that your story was missing the elements of empathy and understanding. Without those elements, the story becomes rather one sided and offensive.

You know, somehow I knew this would get on the personal level. "If this happened to your child as you know them now..."

I'm going to strip down my argument to the bare psychology in order to tackle this one.

It is deep with in a human's id to want to terminate their unborn should they be seriously "defective". This is a "survive and thrive" instinct that almost every creature on the planet has. We get upset when a mother cat abandons a kitten and wonder how on earth such a loving mother could do that, but the truth is doing so does not make her any less of a good mother. She's following her instinct, which is all she CAN do.

Humans have a choice about whether or not to follow their instincts. We can be made aware of our instincts and restructure our behavioral pattern to go against our instincts. That's why we, unlike any other creature on the planet, get upset when a mother cat abandons a baby. We have learned new behavioral patterns to follow that allow us to rescue that kitten in our minds and ignore the instinct to remove "bad genes" from the species.

On the most basic level, the feelings you have now didn't come to you just because you have a better moral outlook. If that were true you would have felt the way you do now back when you didn't have a child with Down's Syndrome. The fact is, finding out your child had Down's Syndrome forced you to deal with your behavioral pattern and determine if it needed restructuring. The restructuring process itself takes a long time and is very hard to accomplish because it's kind of like rewiring a house. You have to strip all the old wiring out and put new wiring in. It gets more complicated than rewiring a house though because that old wiring can come back in bits and pieces, causing you to constantly have to go back and redo the wiring job. Eventually you get the job done though.

From that point the old wiring gets cast aside and it becomes harder and harder for you to recognize what the old wiring was like because you have grown so accustomed to the new set. You start thinking that everyone that has the old wiring needs to change to adapt to your new improved wiring. At first this starts out with just the desire to be helpful, but you soon start getting angry over their resistance. As the memory of what it's really like to have that old wiring put in fade, you start asking questions like "How could they?" Eventually you start coming up with answers for that question and believing that the answers you came up with intellectually are true. The people with the old wiring slowly become more and more "demoniacal" as you forget more and more of the innocence that comes with the old wiring and the actual way old things were wired. At the end of the day, in your eyes, they are purposely resisting the new wiring that every one should see the benefit of.

Jonquil said...

(cont.) Now, I am not saying that this description completely fits you, but I am saying I see someone heading down that road when I read that story.

I wish I could refer you to a particular story I read a while back in Parents magazine about a couple that found out their child was going to have Down's Syndrome. They went over all the feelings they went through, even the feelings that abortion may be the way for them to go. There was no criticism for parents that did choose to go that route, only understanding of the pain they were in.

I don't have a child with Down's Syndrome but the story touched me and I think had I just found out my child had Down's Syndrome it would help lean me in the direction of choosing to keep the child just by showing me a. what I was feeling was normal and nothing to be ashamed of and b. there are other alternatives and a Down's Syndrome child can be a happy child. You may not be able to change a person's mind overnight but you can at least give them hope for change.

If you really want to reach out to people and bring them to your side of the table, it's going to take showing that you understand where they're coming from. That story does not show that you understand where they're coming from. That story makes it look like you are prejudiced against them (note that I said "them" and not "their decision") and quite honestly it shocked me when I found out you actually had a child with Down's Syndrome because I am more accustomed to seeing those type of stories come out of people that really don't have a clue of what it's like to be asked to decide whether or not to end their unborn child's life.

Kim Ayres said...

Any story by it's nature misses things out and is selectively put together to create a point. If you wish to rewrite your own version with added empathy and understanding, please go ahead. Of course it will then be a different story with a different point. As for the idea it's offensive, my take on it is it was meant to be provocative.

With the "if this happened to your child..." answer - well of course. We're already talking about my child and we're talking as parents. If I wish you to understand a point I am making about the nature of parenthood, of course I will refer to a hypothetical situation where you are the parent.

As for your rewiring analogy - if I've got to a place that I feel creates a better understanding of a situation, of course I would want other people to adopt that understanding - I see nothing wrong in that. You seem to be suggesting I don't recall my thoughts before my daughter was born and so don't understand people's viewpoints. On the constrary, I remember very well, and I do absolutely understand their viewpoint. And I believe that viewpoint to be flawed. So I create a story to provoke ideas and thoughts that might trigger ideas in someone who reads it.

If it doesn't have that effect, never mind, and if it does, then all well and good. I fail to see what I've done wrong.

Kim Ayres said...

Your cont... crossed in the ether.

If you care to read through the rest of this blog, you will find many instances where I offer up empathy and understanding. This particular story is one small aspect of the way I feel about life and these kinds of decisions. I hesitated about publishing it at all, as I said in this post. However, after reading yet another news article about the trivialisation of life by so many people, I thought I would put up this piece as a more provocative one.

You are attacking me as though these are my only thoughts.

There are well in excess of 500 posts on this blog. At least go back and read all the ones that are tagged DS before you decide to condemn me

Jonquil said...

I wasn't condemning you. I was relating to you. I'm sorry it offended you. It was not my intention.

Alastair said...

I think this is a great story and reflects the true joys which can be found whatever life throws at us.

We need to do all we can to ensure that people with Down Syndrome and I am launching a world record attempt for the world's fastest bed to raise awareness about Down Syndrome. This attempt is being made in association with the the Auckland Down Syndrome Association who have made a video to help promote the attempt - see the video here

I need to raise some more funds to complete the build of this equipment - you can donate via the Sponsor Me application on Facebook

carlie_star said...

hey I just saw this video of a boy singing a song for his sister who has downs syndrome on facebook and thought you might like it. http://www.youtube.com/watch?v=9b7y9UYt_fM&feature=player_embedded#!